The different types of “I don’t know what to do with you”

I had a phonecall with my GP to catch up on the fact that I’ve been feeling worse than my normal and how I’ve responded to some changes in meds. My dad asked for a summary of the call later on and I replied “he didn’t know what to do with me basically”. Which isn’t actually true, at no point did my GP say that, although that was the gist of the call. I like my GP, he’s always very proactive in helping me and he’d (hopefully) never leave me hanging on “I don’t know what to do with you”. But it then got me thinking that even though he didn’t say those words, lots of people have, and the context in which they get said has a massive impact on how I view how the appointment went and also what I feel like as a chronic illness patient. Here are the different versions of “I don’t know what to do with you” that I’ve experienced and the way I interpret them:

“You’re not my problem. You’re wasting my time”

The most common one. Either because they don’t believe what I’m saying or because what I’m saying doesn’t fit neatly into one of their specialist boxes so they fob me off and tell me to find someone else.

“What are you expecting me to do about that? Go find someone else”

Another common one. It’s “nothing to do with them” so why would they get involved?

“Seriously. It’s not my problem. Leave now.”

The irritated one where they’re impatient they’ve wasted enough time on me, they’re not prepared to waste any more and I need to stop being an argumentative person and go away and sort it out myself.

“This problem is clearly all in your head. I’m not even willing to humour you any more”

Gaslighting. Sometimes said half laughingly. Or, even worse, under the guise of being concerned for my mental health issues, but actually being the cause themselves of half my mental health issues. They’re “just looking out for me but I need to help myself” by seeing a counsellor and doing some mindfulness.

“How many times do I have to tell you. I don’t know what to do with you. Go away”

The really pissed off one. They’ll usually follow this with standing up or holding the door open, making me leave. I haven’t had this one for a while though.

“You haven’t tried hard enough.”

Either because they think I’m lying about having tried their treatment or I’m making a fuss about nothing and I should just get on with it.

“I’m not helping you until you do what I say. I’m the doctor, you’re just a measly patient”

From doctors who don’t like being told they’re wrong. But if I’d listened and done what some doctors told me, I’d be dead. So sometimes they should swallow their ego!

“Can’t help you there, I’m afraid”

Still nope, not my problem, but more jokey.

“This is way out of my depth and you’re actually freaking me out a bit now”

One woman put her head in her hands once when she was saying it. She seemed genuinely stressed out that she didn’t know what to do to help me.

“Help. I don’t have a clue. Tell me what you want me to do/what do you think I should do”

I’m all for working with my doctor and coming up with a plan together. But it’s super stressful when they want me to come up with my own treatment plan – it’s a lot of responsibility. And if they’re out of their depth, then I definitely am too because all of my knowledge comes from experience or gut feelings, and I don’t necessarily know how or why my body does the things it does. It’s a bit of a cop out because it means if I sort it myself, they take the credit for it but if it goes wrong, they can say it’s my fault.

“I can’t help you and I’m sorry about that”

A much nicer version of the first one. Because they don’t just leave me to it. They want to help but don’t know how

“I can’t help you but I’ll try to find someone who can”

An extension of the last one.

“It’s not my speciality but have you tried…?”

Sometimes this is helpful, sometimes it’s not. Because if they go through a list of suggestions of things I’ve already tried, I feel bad for saying “yeah but I’ve tried that and it didn’t work” and it can be bordering on the verge of me seeming to be an combative patient. But sometimes they do come up with something that might help. It can also be a bit depressing to go through because it kind of rams home how difficult life is, going through a list of all the things I’ve tried in about 30 seconds.

“No idea. Let’s do a bunch tests”

Which can be helpful because they’re thinking outside the box, but it can also sound a bit desperate and like they’re clutching at straws because they don’t have a clue.

“What are we going to do with you?”

You know that jokey voice? The one where they say something silly afterwards like “you’re too young to have all these problems” or “shall we just chop your head off” kind of thing. Most of the time I don’t find these comments funny. Because, again, it highlights how depressing everything is. It depends on how well I know the person saying it though, but a lot of the time it’s nurses who’ve just come on the ward so only known me for a nanosecond.

“I’ve got too much on my plate. The NHS is overworked and under paid and I could really do with not dealing with this right now”

I hate this one. I don’t care how crappy they think their life is, they’re not the one sick and asking for help from someone who’s just trying to use *my* consultation time as a way to complain about a job they’re getting paid for. If they don’t like it, go get another job or work as something else. They have that option. I only have one place to get my medical care.

“I don’t know what to do with you but it sounds pretty crap. So talk to me about it, I’m listening”

Sometimes having someone to listen to all the issues I’ve been having and having them acknowledge it is what I need. Sometimes there isn’t a solution, but you don’t often get the opportunity to have any feelings about it unless someone takes the time to do this version of “I don’t know what to do with you”

“Ooooo that’s really interesting. I want to learn as much as possible about it”

I have a complicated medical history, but it is pretty interesting. And I don’t mind answering questions or having discussions about stuff because that’s how everyone learns.

“I don’t actually know what to do with you and I have no shame admitting that. But that doesn’t mean I’m not going to help you”

My personal favourite. I much prefer it when doctors are aware of the gaps in their knowledge but are still going to do something about it as much as they can, once they’ve done some homework.

“Leave it with me. Do X for now, and I’ll have a think and do some research and maybe contact some people and get back to you”

Another favourite. This one and the last one is usually what my GP says.

What my GP actually said, in summary, was “tell me what’s been happening; what were you hoping for?/how can I help you? shall we try X? Let me go away and read all your cardiology letters and have a think, and I’ll ring you again next Friday once you’ve seen endocrinology”. I didn’t come away with a better plan, he didn’t have any answers but he listened to me, didn’t once imply that I could be lying or over exaggerating, didn’t dismiss or minimise my symptoms, said he’d go away and have a think, do some research and wait until we’d heard what my specialist had to say. He gave me a time he’d ring me later in the day after I’d seen the specialist. And I know he will because he always does exactly what he says he’ll do. That’s exactly what you want in your doctor.

What doctors sometimes forget is that the actual prescription or treatment plan is only a tiny fraction of the appointment. That’s the “easy” part- you either come away with a plan or you don’t, and you’re not going to see results as soon as you walk out the door anyway, so physically, you’re leaving feeling the same as when you went in. What you *are* walking out the door with and what might be different is how that doctor made you feel. Did they empower you as a patient? Or did they make out like it was all in your head, belittle you, dismiss your symptoms… In 10 years time, you probably won’t remember what was said in specific appointments, but you’ll remember that feeling you had stood in the corridor thinking about the appointment you just had.

I remember the really good doctors and the really bad ones. In a field as competitive as medicine, why would you want your patients to remember you as anything other than the best? They might not know what to do to help me feel better treatment wise, but they should all know what to do with me to help feel better about the appointment itself, at the very least

What it’s like living with a rare illness

It’s rare disease day on the 28th February. My rare disease is adrenal insufficiency, where my body doesn’t make enough of the hormone, cortisol, which everyone needs to keep alive. It’s more common now, but when I first got diagnosed I was kind of left to my own devices and got told the wrong name for it for a while (!)

I’ve been thinking about what it’s like having a rare disease. I’ve been trying to work out what the worst thing about having a rare disease is. For me, I think it’s the pressure of it. The mental load.

Chronic illness burnout is a thing. Some chronic illnesses like mine or diabetes require constant monitoring, adjusting and treatment. Your entire life revolves around it because it has to- if you don’t pay attention properly, you could die. But unlike diabetes which is well known among healthcare professionals (or it should be), when your condition is rare, *you* are responsible for keeping yourself alive. It’s a lot of pressure.

You work this out really early on after diagnosis, usually after someone has almost killed you. Not necessarily because they weren’t trying to be a decent medic, but because they just didn’t know what they were doing. You can’t blame them though, because doctors can’t possibly know everything about every illness. But it means you have to become your own expect quickly.

I’ve been trying to think about how to explain the exact feeling this pressure is for a few days now, and the best way I can think of is a term I’ve come across in training my dog to be an assistance dog- “intelligent disobedience”. Assistance dogs have to be super disciplined, but they have to have skills of intelligent disobedience. They have to follow the rules *except* when doing so would cause harm for their handler. Eg a blind person teaches their dog to always take them on the pavement. But if there’s an obstacle, they might have to guide them on the road. They have to use their intelligent disobedience skills to decide what’s best for their handler at the time, whether they should break the rules or not.

It’s like that with me. I have to follow rules to survive. Good patients take their meds, eat their prescribed diet, do exercise, follow what their doctors say. Except rare disease patients have to have intelligent disobedience- if I’d done all that the way my doctors told me to, I’d have died. Fact. There have been way too many times where doing what a doctor said would have meant I would have died. One of my stock phrases that I use quite a lot is “if we do it your way, I might die. If we do it my way, I’ll definitely survive. How confident are you?” I have to show intelligent disobedience and decide which doctors to ignore and which ones to agree with.

*That’s* the stressful thing. Knowing when to fight, how to fight and why to fight. You’ve got to know how to approach different people in different ways in order to get what you need. You’ve got to keep constantly up to date with the current research and have encyclopaedic knowledge of your symptoms, test results, and any patterns you’ve noticed so you know why to argue or ask questions. It’s constant. And on top of that, if it does go wrong, it’s pretty much all your fault, even though you have zero medical training.

So what’s good about having a rare illness rather than a “boring normal” one? People might not remember you, but they remember your illness. Every time you walk into a hospital, you’re trail blazing. You can have a huge impact on treatment of other illnesses. Did you know that endocrinologists and their knowledge of how steroids and cortisol work in the body were crucial in the development of treatment protocols for covid? Patients with adrenal insufficiency helped with that.

The mental load of having a rare illness is huge. It’s all consuming and massively time consuming. But with that burden comes a power to have some kind of influence on future generations. I figure if I have to have a life threatening, debilitating condition, I may as well have a rare one one where I can have a positive impact somehow 🙂

To my healthcare professionals

(I’m using voice to text, so apologies in advance for any errors/lack of editing!)

CW: medical trauma, PTSD

To my healthcare professionals,

I need someone to listen. Anyone to listen. So this is a general post to healthcare professionals, based on an experience I had in a A&E this week.

As a very quick summary, I have adrenal insufficiency and I dislocated my shoulder this week by lifting my hand up to scratch my head. Adrenal insufficiency can kill me very easily, particularly when I’ve had a traumatic injury such as a dislocated shoulder. Time is everything. I followed my protocol in that I rang 999, the ambulance crew came out and I was taken to hospital. This is the fourth time that I’ve dislocated my shoulder, and on one of those times medics’ lack of speed and ignorance almost killed me.

Time is everything when something like this happens. I need to give you a lot of information very quickly just in case I pass out. Because if you haven’t had that information you’re not going to know what to do with me. I’m not a typical adrenal insufficiency case anyway, it’s an illness that very few medics know an awful lot about on top of that, and there are nuances that most people don’t understand, even experienced endocrinologists. One of those is the way that the body responds to trauma in a crisis situation. So yes, it sounds like I’m being annoying, but I need you to listen.

Here’s what I want you to know. You might know some of it already, but I need to know that you know it. It takes me 30 seconds to say, and sometimes I don’t even need to say half of it because I can see you’ve done it or started doing it.

⁃ I’m not a typical case of adrenal insufficiency. My blood pressure goes up in crisis not down. Don’t tell me my obs are fine when I know they’re not.

⁃ I won’t die if you give me too many IV steroids. But I could if you don’t give me enough. If in doubt give me the steroids. If I’m asking for the steroids, definitely give me the steroids, because I actually feel like death might happen.

⁃ Until we fix the trauma, I’m not out of the woods, even if I’ve had my steroids. It’s like running a tap without putting the plug in. You can put the required amount of water in to fill the basin, but without the plug it’s not going to stay in the sink. That’s what happens if you give me IV steroids and you haven’t put my shoulder back in socket yet. My body is going to keep needing more, even if you’ve given me “enough” according to your protocol. Bodies don’t pay attention to rules written in textbooks.

⁃ Unless you have a very, very obvious clinical reason to suggest otherwise, it’s always safer to assume that a person is in adrenal crisis and treat that first.

⁃ A person in adrenal crisis should be hooked up to a monitor constantly, preferably in resus or at the very least majors, and they shouldn’t be left unattended or out of shouting distance until we know that it’s not a crisis and whatever was causing the issue has been resolved. Because when we crash, we crash quite spectacularly. We look okay and sound okay, and then we suddenly aren’t. I’ve had blood work that says I should be in a coma, but I managed to stand in front of a class and teach for five hours. The body can do incredible things when it has to.

⁃ I’m complicated. I have a huge list of diagnoses. Let’s get past the life threatening bit first and then you can show me how much you know to your heart’s content. Until then though, you don’t know everything about me and I don’t have time to give you 10 years of medical history when you only really need the headlines that I’m trying to tell you.

Here’s what went wrong the other day:

moving fast is everything. You might think you’re moving quick enough for your individual little bit of what’s happened, but do you actually know everything that’s happened until I’ve got to you? If I say we need to move quicker, it’s because I’m really struggling and I’m really scared that I am going to pass out and end up with people needing to resuscitate me. You wouldn’t know that the other day it took a long time to get through to the ambulance service because they had a high volume of calls. So I had to listen to the dialling tone for a good three or four minutes. Then the woman didn’t understand my medical condition and phone signal was dodgy, which took an extra few minutes to normal to find my red flag which guarantees me a quick ambulance callout. My dad had issues getting into the water for injections fluid container because the NHS has switched from plastic to glass vials which you have to snap open and it was ridiculously tough. It delayed me getting my life-saving medication by another couple of minutes. The ambulance crew were too busy making sure they were spelling my information correctly on my paperwork rather than actually getting some obs done or getting me out to the ambulance and doing it in transit with my mum. They refused to give me any additional hydrocortisone (not qualified enough), and I had to ask my dad to give me it instead. Eventually I managed to convince them that they should be pre-alerting the hospital and I think because I started saying words like ‘pre-alert’, they started taking me seriously and blue lighted me.

Once at hospital I tried to give my brief synopsis of what I need people to understand and listen to again. Without having any obs done or knowing anything about my medical history, the Doctor who came to see me immediately said that I wasn’t having an adrenal crisis. Which, to me just means I don’t trust this person to keep me alive, because how can you possibly say that I’m not in danger when you literally only have one BP measurement that was done in an ambulance over half an hour ago. This doctor wanted to send me round to x-ray to see if my shoulder was actually dislocated, which is fine, I understand that’s the protocol for a dislocated shoulder, but that’s time I don’t necessarily have. I know that we can do an x-ray in resus if we really have to, and the last time I dislocated my shoulder, the A&E consultant decided it was less risky just to put it back in and fix the problem later, than it was risk a full-blown adrenal crisis (thank you for listening). I’m also super aware that x-ray in the middle of the night is quiet and there aren’t many people around, so if I were to have any issues I’d be even more stuck and potentially with a group of people that have no idea what to do with me, because they’re radiographers, not emergency department staff. Plus, if you’re going to be pulling my arm around to try and get a good x-ray, that’s going to exacerbate my pain, and therefore make me even more at risk of dying if you haven’t given me my IV steroids.

I’ve been through this a lot, so I know how the system works. Which brings me to my next point…

Don’t try to pacify me or bullshit me. I can tell when you’re doing that a mile away.

The doctor tried to reassure me that I wasn’t in crisis because I was being monitored. I wasn’t, because I didn’t have anything attached to me, so yes she might’ve been watching me, but I wasn’t being monitored. That’s not the same thing. I pointed this out to her and she said that they had a recent BP done. They hadn’t. I know when you’re following a protocol and your hands are genuinely tied, and when you’re choosing not to to do something. So when you say you need to do an x-ray before you can relocate my shoulder, I know that’s not necessarily true in the way that you’re suggesting it. I can predict what is going to happen and what normally happens quite easily, so when you sent me to x-ray with the healthcare, I knew I was in trouble. I asked him if he even knew what my main medical condition was, and he said he was “just a healthcare”. Then I asked him if he knew why I was even having an x-ray, and he said he didn’t know. I asked him to get the nurse and he refused. So here I was in a corridor in the dark by myself with someone who didn’t even know my name, I had no identification on me because I didn’t have a patient wrist band (side note: that’s one protocol right there you didn’t follow- so don’t give me crap when you’re picking and choosing protocols), and I was potentially in an adrenal crisis with someone who didn’t even know what an adrenal crisis was and definitely no hydrocortisone nearby. Which meant I ended up shouting at the top of my lungs for my mum from this dark corridor and because I was making such a fuss, they sent me a nurse who was actually brilliant and took everything on from there on in. She told the x-ray department, once she had a go at them for ignoring me out in the corridor, that they didn’t need to do all of the required x-rays we just needed a quick confirmation and the report immediately being sent back to the department. Which they didn’t actually do in the end, they were stood around chatting, until this nurse went and had a go at them again. This is why I didn’t want to have to go to the x-ray department for my shoulder x-ray because time is everything. I could die, but it’s obviously more important for me to overhear what my radiographer will be wearing out on Friday night.

You need to act proactively not reactively.

Why do I have to wait until I’m in a full blown crisis when we could prevent it? The doctor said she knows how to treat an adrenal crisis, I’m sure she does. But why do we have to wait until we get to that point when we can prevent it by a little bit of quick moving, and some proactive measures as a just in case. I know it can take up to 20 minutes to get hydrocortisone IV written up, for the nurse to get it, for it to be mixed up and then given to me, which if I need it and it’s not there, it’s obviously a big problem. Add in chat comparing going out outfits as well and it’s longer. While I’m getting my x-ray, this could be written on my chart and sorted and if we don’t need it then it’s fine. But if we do, it’s there. Put a cannula in. I might not need it, but if I do end up having a full-blown crisis, all my veins will start to shut down and you might need to get the ultrasound machine to be able to put one in, which delays everything. I’m blatantly going to need fluids and hydrocortisone at some point, so put a cannula in at the earliest possible opportunity. If you can’t fix the trauma, in this case my dislocated shoulder, do something else which will help and slow a potential crisis down. Give me lots of pain relief. Don’t stress me out. The worst thing about having a condition where stress can literally kill you, is that you don’t get much more stressful than doing something like dislocating my shoulder, and then having to deal with people not listening on top, all while trying not to die.

You need to take into consideration all of my medical experiences to date, not just the interaction you’re having with me.

I can’t explain how important this is. You might be having this interaction for the first time. You might be thinking you’re handling it really well. But I’m not having it for the first time. And I’ve had a whole series of negative experiences leading up to this point. You might be annoyed that I am seeming to be a combative patient, that I’m being defensive, maybe even rude, and that I’m trying to tell you how to do your job. But there’s a reason why I’m acting this way, and it’s because everything has gone horribly wrong so many times in the past. I’m not being dramatic when I say people have tried to kill me. Please remember that no matter how your day has gone, I am a patient and I’m not feeling well and i’m scared. Your job is to make my experience as good as possible. And that means not letting your ego, your issues, or your lack of awareness get in the way. Listen to what I’m saying. I appreciate that you will come across horrible patients who are rude all the time, but you won’t come across as many patients with rare, complex illnesses like me in the same way. You have to treat us differently, because when you have something like my condition it literally impacts on every waking second of your life. And, in my case this week, while I was asleep. I have to be an expert in my condition, because no one else can do it for me. So please listen to me when I tell you a fact about me, because I’ve been there and done it a lot of times, whereas you haven’t. And every negative interaction I have in these kind of circumstances only adds to my PTSD, meaning that I’m going to be even more forceful about trying to get my information across the next time.

Alternatively, *you* could be the one that breaks the cycle for me. You could be the one that listens to me, reassures me not pacifies me, and acts speedily but calmly and actually gives me the opportunity to back off a bit and let someone else take control. Because that’s what I actually want to happen, I want someone to look after me, rather than me feeling like I have to be on top of everything all of the time. I just need someone to listen to me in the first place. Unfortunately, I don’t have the luxury of giving you the benefit of the doubt to start off with, until I know that I’m in safe hands. Because if you don’t listen or get it wrong, I can die. Whereas you have the opportunity to be able to show me that you’re hearing me, taking me seriously and combining my experience with your own to come up with a good plan that works for everyone. Please choose to be that person instead.

If I’m everything that you hate in a patient, it’s because your colleagues treating me before you made me that way. I didn’t start off my patient life needing to “test” my doctors before trusting them. But trust me, I want to remember the good patient experiences, more than the negative ones. So I need you to listen.

It takes 30 seconds at the start of the interaction for you to govern whether my experience is going to be a positive or negative one. You can choose how it goes. People usually come back to me once it’s all calmed down and apologise or say “I didn’t realise that…”. But by then, the mental damage has been done. Please choose to be the one who listens and reacts, rather than the one who dismisses me.

And if you made reading this far, thank you for being someone who listened to me 🙂

Another ranty post about my (not) fractured hip

A couple of weeks ago, an orthopaedic registrar and an a&e registrar (residents, for US readers) told me I had a fractured hip based on the MRI of my hip and pelvis I’d had done. I had Physiotherapy this week and she told me that it’s not my hip that’s fractured, it’s my pelvis. So I’m now a little (a lot) concerned that either these 2 doctors can’t read reports written by radiologists (it clearly says it’s the pelvis) or they don’t know what the difference between a hip and pelvis is when they look at a skeleton on an MRI. What I suspect actually is the case, is that I’d been saying “my hip hurts” and they’d decided to keep calling it my hip when talking to me about it because I might not understand the difference ie, dumbing down their language because they’re talking to a patient. Either way, I’m pretty grumpy. I’m really annoyed because:

⁃ the exact places I’ve been pointing to as being agonising pain is pretty much where I’ve got the fractures according to the MRI and my physio. Even I can see that looking at it on the MRI. So how on earth did they miss this on 3 X-rays I had done in a&e over 6 weeks? It’s another example of patient blaming- I said I thought I’d fractured my hip because, to me, as a patient, that’s where it is. So the radiologists only reported findings for hip and didn’t look anywhere else. But I quite clearly pointed repeatedly where the pain is, so one of the many doctors ordering scans should have queried it.

⁃ It’s not just fractured in one pelvic bone, but at least two and at least 2 fractures in each. Again, how was it missed?

⁃ There was one time in a&e where I was in so much pain and they refused to a) take my pain seriously and only offered me paracetamol as pain relief, and b) refused to treat my adrenal insufficiency which was triggered by the fracture, which could have actually killed me and it’s more fluke it didn’t. The only reason I wasn’t critically ill, with hindsight, is because I’d also been ignoring the endo’s advice to taper my steroids, so I’d been on a high enough dose by sheer coincidence to keep myself alive with these 2 extra fractures. No one really listened the 3 or 4 times I went to a&e.

⁃ The only reason I have a fractured pelvis in the first place is because a nurse tried to help me move in a really bad way and I ended up injuring myself because she didn’t listen.

WHY DO PEOPLE NOT LISTEN?!

I’d understand if I was wrong, but I’m not. I’ve been right every time. I said repeatedly I thought I’d fractured something in my hip, lots of people made me feel like I was being dramatic and drug seeking. Now there’s an MRI proving it, suddenly people are apologetic and taking it seriously. Fine. But this isn’t the first time this has happened- I said I thought I had a fractured foot and had the same experience. I said I thought my shoulder was out of socket/not put back in properly and had a similar response. Scans have since confirmed everything I said.

You might be thinking ‘at least they’re taking it seriously now’. Well yes, but I had 4 months of really bad pain, not being able to walk properly (still can’t), being made to feel like I was over exaggerating my pain, essentially being house bound and not having the right physio on it which could have maybe helped recovery. And that’s just for the pelvis. My shoulder problem was at least a year of me saying the same thing over and over. And all of these extra ‘stresses’ (fractures) trigger my AI, which makes me feel terrible anyway, but also the a&e docs and a couple of on call endos kept saying that it doesn’t have any affect on cortisol levels (it does, there’s research) so kept refusing me steroids when I actually needed them. Basically playing Russian roulette with my already faulty endocrine system.

I sound like a terrible patient, don’t I? I kept going to a&e when people told me I didn’t have any fractures and I’ve clearly admitted to ignoring my endocrinologist’s advice of tapering steroids. Except if I’d actually done any of the things doctors had told me, I’d probably be dead by now (true story).

My physio is great. Her and my foot consultant are the only ones who see me as an entire human being when it comes to my bones. This week, my physio took the time to explain it all to me properly. It’s pretty bleak, in that I’ve got a lot of things which won’t heal now, which is partially why I’m so annoyed at all the other doctors. It means I’m likely going to have this level of pain forever, which is obviously going to get worse over time. And so far no one is listening to me when I keep asking for preventative treatment rather than waiting for all my bones to break. Because they don’t listen to me and tell me they don’t exist for months on end. Not only did they ignore me when I was sure something was wrong, they then added insult to injury (pun intended) by only giving me the bare minimum of information. How can I make informed decisions about my care if they don’t tell me half of the information? It’s so important for me to know, because I have condition which requires constant management entirely based on guesswork/me making decisions based on symptoms, which can kill me if I fracture something. I don’t need to be second guessing the ‘easy’ to work out bits of my health like fractured bones. Thank goodness there are scans that can back me up. The trick is getting them to order the scan in the first place so that I can get the back up.

I get that I’m a complex patient and so I’m going to be the exception to most patients and they might not be prepared for that. But a lot of the time, they’re the ones telling me I’m ‘medically unusual’. If they know this, they should listen to me when I say ‘this is what happened last time’ or ‘I don’t know why but…’ and think outside the box. And while they’re flicking through their medical textbooks and journals for ideas, they should revise the hip and pelvis! 😉

A Ranty Post About Fracturing My Hip

Says what it does on the tin, really. Potentially a long and rambley post! Normally I edit blogs, but I think it might be quite therapeutic to get it all out.

Apparently, I’ve got a hip fracture and a tear in my abductor in my hip. To add to my 4 feet fractures and my (also apparently) torn tendon in my slow to heal dislocated 3 times shoulder.

Way back in November, a healthcare worker wanted to chivvy me along and went to grab my then newly dislocated shoulder to pull me to my feet. So I tried to get away from her by rapidly standing up funnily on my right side. But because I had a moon boot on, as that foot has 2 fractures in it, I twisted and slipped and did something to my hip. I didn’t fall over though.

It’s honestly the most painful thing I’ve ever had. Way worse than the dislocated shoulder. I couldn’t put weight through it, get in and out of bed (so I slept in a chair for about a month), couldn’t get on and off the toilet… I couldn’t move an inch without incredible pain. My adrenal insufficiency was massively triggered, I went to the GP a number of times, to a&e, 3 times at the GP’s recommendation, drank oramorph like it was calpol and nothing helped. I still can’t walk on it properly and I’ve only just managed to stop walking around heavily reliant on crutches. It’s been excruciating.

However, when I went to a&e and told them all of this 3 times, they offered me… paracetamol and weren’t very sympathetic. Which I couldn’t take anyway because I was already taking cocodamol, which has paracetamol in it. I had a massive meltdown while I was there one of the times and told them they were probably going to kill me with my adrenal insufficiency and they called security on me (not because I was being threatening, but because I cried and asked* them to not let me die in the waiting room.)

*ok, I was definitely shouting but I was pretty scared I was going to die. I wasn’t swearing or threatening though. Just loud and hysterical/hormonal. And because I couldn’t move because of my hip, I didn’t have an awful lot of choice but to shout at them since they refused to come over. The security guard soon realised I wasn’t really a problem.

Anyway, once I got assessed properly and they apologised for the way they’d treated me, they put me back into the fracture clinic for my hip where I told them I thought I’d fractured my hip because of how much it hurt and the way it felt like all my other fractures. One reg was concerned about how much pain I was in and wanted to get me an emergency MRI but his consultant overruled him and said that my hip x ray was fine so no MRI. It could just be your arthritis, the consultant said.

Sorry, what? I have arthritis?

Yes, according to the x ray, I do. No one had ever told me this in the 3 other x rays I’d had done in a&e. I decided to give them the benefit of the doubt because, to be fair, the radiologist had been told to look for and report on fractures, not give me an arthritis diagnosis. They probably assumed I already knew.

Except I went to my (shoulder) physio appointment a week later and asked her to check, and she told me that the x rays are such poor quality that it’s impossible to tell if I do have arthritis or not. She showed me. They’re really grainy. So do I have arthritis or not? Still not sure.

Either way, this isn’t the first time I’ve been accidentally diagnosed/told about something in a throwaway comment. Anyway, for the last 4 months, everyone’s said that my hip injury is “just soft tissue damage” and it’ll heal by itself. Keep it moving and working and walking on it so it encourages it to heal. Okie dokie. I do what I’m told, because I’m a good patient, and I tell myself to get on with stuff, even though my hip really, bloody hurts and severely limits my day to day activity even more than anything else has. To me, it still felt like all my other fractures did but a million times worse.

A couple of weeks ago, I get a phone call saying there’s a cancellation in the MRI department and could I go in the next day for my MRI pelvis I’d been referred for. This was news to me, because as far as I was concerned, my hip problem was going to heal itself with time and no doctors were following up on it. Maybe it was gynaecology who’d requested it then? I asked the lady and she said it hadn’t come from a specific department so didn’t know. I went for the scan anyway and asked the radiographers who guessed orthopaedics based on what they’d been asked to do, but again, they didn’t really know.

I had to go to my GP for some routine blood tests 10 days later, so I asked them if the results had come back yet and did they request it. Nope, not them either, but no results. The next day I had fracture clinic for my foot, so I decided that I’d just sneakily ask the doctor then. The reg said they hadn’t requested the MRI but it was definitely my hip rather than gynae so he said he could show me. Hooray!

I think he thought it was going to come back as fine (as did I) because he read from the report and told me it was fractured and I had a tear in my abductor before I said:

Sorry, what? Seriously?

It’s actually fractured? Apparently so. And there’s a muscle tear. He asked me if I’d been in a lot of pain and I said “well, yes!”

I don’t know a lot about hip fractures, but I do know that it’s bad news and you probably shouldn’t be walking on it until it’s been properly cleared by someone who does actually know something about hips. I said this to the reg who blurted out “Hey I’m your foot doctor, I dont know”. I was a bit exasperated by this point- if he was my foot doctor and I don’t have a hip doctor and no one knows who actually asked for this MRI in the first place, who exactly do I ask about it? Besides the 3 lines written by the person analysing the report, who isn’t necessarily a doctor, there’s literally no one taking responsibility for it.

The reg said I had to go back to a&e to get back in the system. Now? I didn’t really fancy spending unnecessary hours in a&e during a pandemic for an administrative thing, when I’d look like a right idiot turning up and saying “hi, I fractured my hip in November so it’s clearly not an emergency department problem but the computer says I have to so someone can treat me”. I asked the doctor if I’d be making my hip worse by walking on it and he said “well yeah, I imagine so if it hurts bad. You have to go to a&e and get the trauma team to check it”. He might be my foot doctor, but he was also an orthopaedic doctor so it bothered me that he thought I could be making it worse the more I walked around on it.

So much for the “keep it moving and walking on it to encourage it to heal” brigade from the last few months.

My dad and I went round to a&e and said I’d had an MRI and fracture clinic couldn’t clear me for walking on it and I needed to see the trauma team. They said that didn’t make an awful lot of sense, since they’d usually get someone down from fracture clinic to clear it. They were also confused as to why I’d had a fracture clinic appointment that wasn’t about my hip but I seemed to have new knowledge about my hip. Just to add to the confusion, you get allocated a different doctor for each fracture/injury you have, I’ve currently got 2 (feet and shoulder) after managing to persuade people that having a different doctor for each foot was stupid.

After a bit of detective work by the triage nurse, I was seen by the orthopaedic reg on call in the emergency department (who isn’t attached to fracture clinic) who was a bit bewildered as to why I was saying I’d fractured it in November but the MRI was only done a week ago and if I had fractured it that long ago, the type of fracture it was should have healed by now. I said that slow healing fractures seemed to be my “thing”. He said it didn’t matter anyway because they didn’t usually do anything about the type of fracture I had (ie surgery) and it’ll heal in time and they wouldn’t follow up unless there was a problem. I don’t think it will heal though, because they said that about all my other fractures too, and they’ve still not healed.

So what do I do about it? Apparently it takes 3 months to heal, which should be about now, but the MRI they did a week ago said it was definitely still fractured and hadn’t healed. I’m so flipping annoyed about this for so many reasons

⁃ I knew it was fractured. I told them that over and over. I get a specific feeling with my adrenal insufficiency when things are fractured. Yes, stress fractures don’t always appear on x rays straight away after the injury, I know this, but I had 3 x rays done over a month. And the a&e ortho reg said he didn’t know if it was a stress fracture or not anyway.

⁃ The X-rays were poor quality so why didn’t someone besides that one reg who got shot down by his consultant think to order an MRI?

⁃ I’ve been in so much pain and so many people made out I was just being stupid and should get on with it. The amount of pain I was in and the fact I couldn’t weight bear should have justified an MRI. The reg thought I needed one. My GP wasn’t satisfied it was just nothing, otherwise they wouldn’t keep sending me to a&e

⁃ Everyone kept saying “it should do x”. In normal people yes. But one fracture clinic letter calls me “mysterious” and another referred to my physical exam as “strangely negative” despite a scan showing a positive result. And that’s just fracture clinic, I have many quirks which “should” do the opposite.

⁃ I’m getting fed up of saying the same thing over and over and being told “no it’s not fractured” for months to then be told “oh sorry it actually is fractured, you must’ve been in a lot of pain” months, even a year afterwards.

⁃ I keep fracturing things in non-trauma related ways so I get dismissed, despite having osteoporosis at age 34, and no one seems to be trying to work out *why* I keep fracturing things. They keep blaming everything on either another department or the fact that I take steroids. I think it’s a gynae and endo problem. Ie hormones- I don’t make very many of the bone maintenance ones, but can I get the two to talk to each other to get some proper HRT sorted? Not a chance.

⁃ Surgery isn’t really an option for me because it’s too risky. So I’d quite like to stop fracturing things if I can help it by getting hormone treatment sorted. And so far my foot and shoulder would’ve been operated on by now had I not got a complex medical history.

⁃ I only have one fully functioning limb left! (Everyone- touch wood!) And I’m *very* paranoid about something happening to that! My bones crunch when I breathe sometimes and I dislocated my shoulder by rolling over in bed. Sometimes it’s very difficult not to be scared that I’m going to injure myself by doing something ridiculously normal.

The good news is, if I have to have a hip fracture, this is the best type of one to get. The bad news is, I doubt it’s going to be as straight forward as the ortho doc said it was because all the other straight forward fractures I’ve got aren’t cooperating the way they “should”. And I don’t currently have a hip doctor.

Here endeth my rant about my hip. I just wish people would listen to me when I say I think I’ve broken or injured something! I’ve been right every time!

“Come Back in 3 Months”

Last week, I had 2 consultant appointments. The outcome was the same for both- “I’ll see you again in 3 months once you’ve done X”. Both had pretty bleak outcomes full stop. But one appointment made me feel empowered and supported by my doctor, and I left the other one in tears feeling abandoned and demoralised. (It takes a lot to make me cry about medical stuff)

Last time I spoke to my first consultant, she told me to taper one drug so I could start on, and if necessary, increase another one. I did this but have had a flare up since christmas so my GP put me back on the pill I got told to taper and I haven’t been able to taper again. I told my doctor this and she said “we need to break the cycle to help get you back on track”. I asked her if she had a plan, and she said that there were a few options we could try, but there were no guarantees with anything and it would be trial and error, and even then we might not have anything which worked. She briefly told me her thoughts on each plan, including the ones she didn’t want to try if at all possible, because of other problems which might arise, and explained her reasons why. I asked her what I should do in the short term, or if the symptoms got really bad/emergent and was given advice. Like most things with the NHS, there’s hoops you have to jump through, meaning that even though she was pretty sure of what treatment route she wanted me on, I had to do a diary for 2 weeks before she’d be allowed to put me on it. She could have said ‘do the diary and I’ll see you in 3 months’, but instead she said ‘do the diary, send it back to me and I’ll make an appointment to review it that week so that we can maybe get it started before I next see you in 3 months’. I was given the chance to ask some questions at the end, where I said I’d done some reading, and she said it was something we could look into if things were still causing me problems.

We. Help. Options. Reasons why. Short term. Long term. Review. Those are the words I heard. She listened to what I said. She had clear ideas of what she wanted and what she didn’t want but also took into account what I wanted. I was allowed to ask questions. I didn’t feel the need to filter or guard what I was saying in case I annoyed her, made myself look stupid, or said something that she could use against me/catch me out with. She cared about my quality of life and took my description of my symptoms seriously.

After that telephone appointment, we got in the car and drove to hospital, 90 minutes away, to go to my second appointment. This was my first time meeting her, so I was apprehensive because I’ve had some really terrible doctors in the past. Her bum had hardly hit the chair before she told me what my treatment plan was going to be: you need to taper, you’re on too high a dose. I told her what I feel like every day, and then she said I needed to taper. It felt like she hadn’t heard what I’d said. I said I’d been trying, but I couldn’t, and explained why again. The conversation continued like that for a while- her saying ‘you need to taper, you’ll end up with a whole host of other problems if you haven’t already got them’ and me saying ‘I can’t cope with what I’m on, what am I supposed to do when it gets so bad I feel like I’m dying’. Phrases like ‘You’ll feel horrible but you have to do it’ and ‘you’re just going to have to ride it out’ were said. She told me I was wrong about some things other doctors had said to me. I was told she was trying to prevent me from having bigger health problems in the future which is why she was giving me the ‘difficult talk’ now. I said about my quality of life being poor and she cited mental health as a reason and that I should be able to cope because other people did. That she was at least acknowledging it wouldn’t be easy and giving me some leeway because ‘some hospitals would refuse to prescribe any extra and I’d have to taper right away.’ What about a long term plan, after tapering and I still feel like I do every day? That she’d ‘keep an open mind but you still have to taper’. I cried for most of the appointment. I agreed that I needed to be on a lower dose, I know this and she’s completely right. But in the short term, ie for probably the next year, what do I do when my symptoms get really bad and debilitating and I can’t put up with any more. ‘You’ll just have to ride it out’. I felt like an addict being refused heroin (I’m definitely not an addict). But even heroin addicts are given a plan and/or alternative medications to help them detox of heroin. I just have to ride it out. She gave me a target for in 3 months time and said ‘no pressure if you can’t, but I think we need something to aim for’. But I did feel pressure, even if she said there wasn’t. It felt like pacifying, empty words.

You. You. Should. Have to. Difficult talk. Refuse. You. You. Those are the words I heard. She listened to what I said but it didn’t change anything. She had one clear idea of what she wanted, that she’d decided on before I’d even walked in the room, so nothing I was going to say would change anything. I asked questions and was given a perfunctory response which didn’t change anything. I definitely was watching what I was saying, worried that if I cried much more my mental health would be used against me. Which could change everything, but not in a good way. Having to ride something out and feel even more like I’m in a living hell doesn’t feel like I’m being supported.

2 different doctors. 2 different departments. 2 different experiences. But both with the same goal: taper. Except one had options and some kind of plan if it didn’t work. The other didn’t.

Largely because of covid, patients are frequently told to think about their medical practitioner’s mental health, that maybe they’re having a bad day, to show some empathy because of the tough times. I get that. I’m very empathetic. But that’s not what happened here. When I go to my doctor, I want to be involved in my treatment plan. I want my concerns to be heard. I want to feel like I can ask for help. That’s the minimum I expect from my doctor. And if you can’t deliver that in a consultation, current situation or not, then you shouldn’t be communicating with patients.

The flip side is *I’ve* been living with covid too. I haven’t been able to see my doctors, I didn’t have necessary treatment which made my chronic illnesses worse, I had to cope by myself and make decisions which I shouldn’t have had to make just so I could keep myself out of hospital and alive. These appointments were doubly important. I needed to feel positive about them because it feels like I’m firefighting and everything is burning down around me.

Neither me or my doctors can do anything about the state of the NHS and covid. But they can do something about how I feel coming out of an appointment. Both appointments had this same message: taper, see what happens and I’ll see you in 3 months. But one appointment made me feel empowered and supported by my doctor, and I left the other one in tears feeling abandoned and demoralised.

Bones and Hormone Replacement Therapy (HRT)

Content warning: osteoporosis, ageing, diseases associated with the elderly, menopause, fertility, HRT, fractures/bone health , gynaecology.

If you’re a female in your 30s, or someone who’s transitioned to female, with a similar experience RE bone health, I’d be interested to hear from you 🙂

I’d never had an orthopaedic consultant until last year and now I seem to spend most of my life hanging out in their waiting room. I’ve been given a different doctor for each “new” problem I have. So I’ve got different doctors in different clinics for my left foot fractures, right foot fractures, left shoulder dislocation and now right hip. It’s confusing for everyone because the doctors themselves don’t know which limb they’re supposed to be looking at, the radiographers don’t know what limb to scan and there’s a risk that things get missed because there are too many people involved. One consultant threw into conversation that my arthritis might be causing me problems in my hip. No one has ever told me I have arthritis, but he said he could see it on the x ray when I asked. The radiographer might not have reported on it because they were only asked to report on a possible fracture and assumed I already had the arthritis diagnosis. I still don’t know if I have arthritis or not at the moment.

But I do definitely have osteoporosis. It’s a disease normally associated with the elderly because it’s all about the density in your bones breaking down, making them more prone to fractures. This is because the older you get, the less your body works in general, but also it stops making as many of the hormones and minerals which repair and maintain things like bone density. It’s especially common in women who have been through menopause, because hormones like estrogen and progesterone decrease, which means your bone density starts to decrease too.

So why do I have it, if I’m only in my 30s? Bone density can decrease for other reasons too, one of which is taking steroids. I have to take steroids to stay alive, so I’ve always known that this could be a problem. I don’t have a choice as to whether I take steroids or not. To help manage any potential bone problems, you get sent for routine DEXA scans every 2 years to check out the density levels and they decide whether or not you need to take extra bone strengthening medication (usually alendronic acid). You can’t just take this medication preemptively though. Because it’s mostly old people who take the medication, there aren’t many studies on long term implications of taking it, and the side effects we do know about already are pretty horrendous eg oesophagus death, severe dental problems, heart issues and infertility being the main headlines. In short, old people die before it becomes a problem, so we don’t know what happens to people in their 70s who take these meds from when they’re 30, for example.

My first DEXA scan in 2014 showed I had osteopenia (pre osteoporosis). I’d already been on steroids for 2 years by this point though, so I was told it was because of this. My next 2 scans showed exactly the same scores and then I had another one last summer which showed a big deterioration and I’d now got osteoporosis instead of just osteopenia. Plus I’d started fracturing things a lot, by doing really basic things like standing up from sitting.

“It’s the steroids” everyone said. I wasn’t convinced. If it was just the steroids, then there would be a gradual decline in my numbers, surely. Not everything being the same for years and then a sudden drop. Around the same time, I’d discovered that I don’t make any estrogen, progesterone, DHEA or testosterone. And I knew about the link of osteoporosis and post menopausal women, so I did a bit of research.

I haven’t been through menopause, that’s been checked. But if I don’t make any of the hormones I’m supposed to make to maintain bone health, then even if I’ve not been through menopause, my body doesn’t know that. As far as it’s concerned, it’s not getting what it needs to stop bone density from diminishing ie estrogen and progesterone, so it can’t maintain my bones properly, menopause or no menopause. So even though I’m in my 30s, my hormones and bones think they’re much older. More like 50s or 60s. Which is potentially why I keep fracturing things.

This seems logical to me. Because it’s only since doctors started testing/changing my hormones that my DEXA scores got worse (ie we stopped some meds like the oral contraceptive and did challenge tests, which involve adding in and taking out hormones). But trying to convince everyone else of this is proving difficult.

The orthopaedic doctors agree that it could be hormone related but are more concerned about the immediate fracture risk. So I’m on the bone medication where we don’t know the long term side effects (alendronic acid). The gynaecologist in charge of estrogen and progesterone say they don’t want to put a woman of my age on HRT (estrogen and progesterone and potentially DHEA/testosterone) because of the increased risk of cervical and ovarian cancer. And stroke and heart disease. They refused to look at testosterone and DHEA replacements because they’re made by the adrenal gland so they’re “my endo’s problem”. But if it is a hormone problem causing my low bone density and I keep fracturing things, my body is constantly experiencing a trauma, which triggers my adrenal insufficiency and means I have to take extra steroids. Which we know also decrease bone density. My previous endo said I couldn’t keep taking high doses of steroids, but equally wouldn’t address the hormone problem because it “wasn’t his field” and my current endo has left the hospital leaving a rather useless locum who doesn’t seem to have even found adrenal insufficiency in their textbook yet. And the NHS tends to deny DHEA exists anyway even though you need it to make estrogen. So I’m fighting a losing battle until I get a permanent endo anyway.

The bottom line, to me, is that it seems pretty stupid throwing pills to temporarily patch over a problem (alendronic acid), particularly where the side effects are so horrendous, when what we should be doing is treating the root cause of the problem. Which I reckon is low hormones.

I pondered about it a bit more and did hours of research and kept thinking back to the DEXA scores. The first scan showed I already had osteopenia, which was apparently because of steroids. But I’d suspected low estrogen and progesterone hormones for ages, because my periods were always odd as a teenager and I’ve spent the last decade badgering people to test them. It’s only now they’ve listened. And, because women’s medicine isn’t really taken seriously in this country in general, when I was a teenager, my doctors just chucked the oral contraceptive at me and told me to get on with it. I was just being a hormonal teenager and I’d grow out of it, was their attitude. What if I’d always had low hormones which gave me low bone density, but no one had done a DEXA scan until I started on steroids? They could have always been osteopenic, I just didn’t know, because there aren’t any symptoms of having osteopenia until you fracture something. Then, as my hormone production got less as I got older, my bones deteriorated more and I started fracturing things so it became noticeable.

It got to the point where my orthopaedic consultant for my right foot said I was probably going to need surgery on a fracture that was refusing to heal. Surgery is really risky for me because of my adrenal insufficiency so we are definitely trying to avoid that and future surgeries (more on that in another blog post). However, it gave me enough ammo to fire at the gynaecology team to get them to listen a bit. After a bit of arguing with the gynaecologist, I got them to agree that as it was all a pretty rubbish situation, the doctors were going to have to compromise. So I’m taking alendronic acid like the orthopaedic consultant wants but also got put on a small dose estrogen patch (HRT) to see if that improves things. If it does, I can maybe stop the AA. I managed to persuade them to test my DHEA which came back as 0. Because the NHS says it isn’t a necessary hormone (so why does everyone else make it then?), I’d have to pay for a private prescription anyway, so I got fed up after a year of asking temporary endos and decided to import my own DHEA from Europe and told my GP what I was doing. She didn’t disagree (not allowed an opinion because DHEA doesn’t exist as a treatment) which is a green light from her basically.(importing is totally legal too). I only started it 2 weeks ago though.

Since starting the estrogen patch a few months ago, I haven’t had any further fractures *touch wood*. In fact, my left foot fracture has started to heal itself again. I have, however, had a soft tissue hip injury so I’m still more prone to injuries which are slow to repair. All of this could be coincidence, but it’s coincidentally happened since I started on HRT.

So for now, I’m assuming I was right. Low estrogen and progesterone were at least contributing to my fracture problem. It’s still a bit early to tell whether or not it’ll help long term, but considering the whole situation is a bit bleak, I’m taking small wins where they happen!

Now I just need to get all of the doctors talking to each other properly so I can get some proper, tailored to me treatment sorted. Rather than relying on me being able to persuade consultants to implement a plan I pieced together myself based on my hours googling medical journals!

Count your blessings

Autumn has not been fun for me for a lot of reasons. It hasn’t been terrible either though, there’s been lots of fun and happy things too. But overall, every time I think ‘oh well, it can’t get much worse’ it somehow manages to. Quick summary:

⁃ I dislocated my shoulder.

⁃ I fractured my feet again. 4 fractures now and counting. Walking is hard and painful.

⁃ It was my first wedding anniversary since I got divorced.

⁃ My really good endocrinologist left the hospital and I don’t yet have a replacement. This was almost as traumatic as getting divorced!

⁃ I got made to go to a persistent pain weekly NHS programme. It was a massive waste of time and did more damage both physically and mentally than good. Medical gaslighting, basically.

⁃ I ended up in a&e a few times with my adrenal insufficiency

⁃ A healthcare professional injured my hip while trying to hurry me/help me out of a cubicle. This meant I couldn’t walk without crutches (remember my dislocated shoulder too) and when I did, it was absolutely agony. I struggled more with my feet fractures and I couldn’t sleep in my bed or wash for over 2 weeks.

⁃ At the point where I’m the most physically disabled I’ve ever been ie I literally needed someone to fetch and carry everything, my parents got covid and weren’t able to help me. Plus I was worried about my parents!

⁃ Then I got covid! Which, fortunately, wasn’t anywhere near as bad as it could have been thanks to the vaccines.

⁃ I had some really appalling treatment from some NHS staff

I don’t see the point in being bitter and twisted about everything because it just makes everything seem a lot worse than it actually is. But I have to confess to feeling pretty cheesed off by everything going on. I find distraction the best way to deal with it, so I did my usual mindless scrolling through Twitter. Which just made me more grumpy because pretty much every tweet one day contained parents moaning about… bloody elves. Or rather, elf on the shelf and how annoying this fun activity and build up to christmas excitement is (maybe don’t do it if you hate it that much?)

Another confession: I quite often get frustrated with parents/families at this time of year, particularly on social media. Somehow, lots of people manage to simultaneously gush about how amazing their lives/christmases/families/children are while also bemoaning how hectic their lives and homes and families are at christmas. I fully understand that both apply and that lots of people find christmas stressful for a variety of reasons. And this post isn’t aimed at anyone in particular. It’s just a general feeling I have most years. I feel frustrated because, to me, it seems like some people get overly caught up in the Christmas rhetoric that they forget that the things that they’re talking about or taking for granted are actually something that are unobtainable or coveted by others. And as soon as the magical, perfect christmas is over, a lot of people immediately revert back to moaning about how they want their kids to go back to school and how they need to practise self care and have ‘me time’ after such a stressful period.

Count your blessings. I don’t mean a picture-perfect facebook post (although do that too, by all means), I mean sit back and see your blessings first hand. There’s a difference between knowing something on the surface and *feeling* something. It took me a while to learn that. It’s not something that can be portrayed in a Facebook post or tweet.

As someone who’s disabled and can’t live by myself so have to live with my parents, divorced because I’m disabled, considered a burden, unemployed and therefore only have disability benefits as my income, and childless because I’m divorced and have poor health, a Christmas with a partner and a family, no matter how stressful, is a pipe dream. But there’s lots of other people who feel the same too.

Here’s some reasons why:

1. If you’re married or have a partner, you managed to find someone to spend your life with, which is something that some people never experience because circumstance or chance means they either don’t meet someone that special or they did and it didn’t work out. Someone to share your life with in itself is a huge blessing.

2. Your house might be messy, but you have a house. You have your own space. I’m currently living in my parents’ spare room. Some people have to share with housemates because they can’t afford it alone. Others live in shelters because their home is unsafe,

3. You have children. I don’t think I need to say anything about people who can’t have children either because of health reasons or the fact they don’t have a partner, feeling it a lot more at christmas. Although everyone’s obviously allowed to moan about their kids a bit and no one denies that it’s hard work.

4. When people complain incessantly (I don’t mean jokey moaning) about having to think of elf fun, or taking kids to see Santa or having to plan out a big christmas dinner for family or taking their kids to parties or going to their own christmas parties, I find myself thinking ‘but you have the means to be able to do that’. I can’t even contemplate that. You have a job which gives you money to afford it somehow, even if money is tight. You have a car and can drive to places or you can use public transport. You can actually physically cook a christmas dinner because you have energy and coordination to do it. I can’t do any of those. You’ve got money to put food on your table, your own kitchen to be able to cook it in. A family, who even if you don’t get on with them are still around. Lots of people can’t afford a christmas dinner or don’t have a family or are spending christmas alone.

I’m fully aware that if I’m irritated by things I read on social media, that’s my problem and I should manage that myself by not logging onto it. I appreciate that some people find christmas toxic and damaging and stressful for a variety of reasons and it’s not as straight forward as just being grateful for what you’ve got. I’m not talking about that. I’m talking about some people really not realising how fortunate their circumstances actually are and taking their lives for granted.

At the moment, I’m finding it challenging to not be angry about the stuff I’ve been thrown the last couple of months because it feels like one thing after another. However, being angry doesn’t make me feel any better- I’m still in the same situation but angry too. So I don’t let myself be negative for long. I’m pretty good at counting my blessings. Here’s me counting mine at the moment:

1. I don’t want to be living with my parents and I don’t have my own house, but I have parents who took me in, who look after me and I’m not having to struggle by myself or live in emergency housing.

2. I might be on a low income but I still have access to food and warmth and shelter every day.

3. I wasn’t able to wash properly or sleep in my bed for 2 weeks because of the pain in my hip. Now I really appreciate having a bed and being able to wash, even if it is really difficult.

4. I don’t have my own kids and never will, but I get to spend time with my niece and nephew which I enjoy.

5. I’m divorced but I had the chance to be married and have a wedding. Some people never have those life experiences.

6. My medical diet and intolerances really restrict me on what I can and can’t eat, which is particularly annoying at christmas time, but I can eat turkey and vegetables which means I can still join in christmas dinner like everyone else.

7. When my parents had covid, lots of people helped us out by delivering things to us or taking our dog for a walk.

8. My health is pretty terrible and I’ve had some bad treatment from NHS staff the last month or so. But my healthcare is free and other people with my medical conditions in other countries would have died by now either because they can’t afford to pay or healthcare isn’t available full stop.

I could write more but I don’t think I need to. Had I not developed my chronic illnesses and had my circumstances forced on me, I probably would still also be taking my life for granted and complaining about things which I’d trade a lot now to have. My point is, for pretty much everyone in this country, we always have something to be grateful for. But I feel like people forget how privileged we actually are to have our lives the way they are. And that we aren’t entitled to having a family, home and lifestyle by default. Those things should be considered a blessing, because they really are.

Life’s always going to have challenges because no one lives in a fairytale. It’s ok to admit to finding things hard. But finding something hard and actual hardship are very different, and most of us have a lot to be grateful for. Christmas is hard for many for lots of reasons. But count your blessings where you can, because it definitely doesn’t make anything worse!

Medics: are you actually “helping”?

This possibly won’t be very coherent because I’m using my voice to text software and I’m mostly venting! Plus I’ve got some pretty strong painkillers in my system…!

Twice this week I’ve been injured by healthcare professionals trying to “help” me. Today I had to go to a&e to make sure I hadn’t fractured anything because someone tried to “help” me yesterday. It’s really frustrating.

People like me who have long term health conditions develop ways of doing things so that we can stay as independent as we possibly can. There’s a reason why we do things the way we do and it’s not always obvious to other people why, but, trust me, we do them that way for a reason. Even people who have temporary injuries or fractures which heal within a few weeks still work out ways of managing. They might not be as finely honed as someone with something long term, but if it works for them and that’s how they’ve chosen to do it, then it still needs to be respected.

The issue isn’t the help. It’s the assumption that the healthcare professional knows the best way of helping and tries to implement it without checking or asking. I know why they do it:

⁃ it’s quicker (for them) if they just do it

⁃ They’ve had training on the most efficient and ‘best’ way of assisting someone

⁃ Their way is health and safety approved

⁃ It means they don’t injure themselves

But like I said, it’s not always obvious what the whole story is. At the moment, I’ve got two fractures in both feet and I’m recovering from a recent shoulder dislocation. However, the only visible sign of a physical disability is the fact that I’ve got a moon boot on my right foot and carry a crutch in my right hand. In theory, I should be using two crutches or using it in my left hand, because it’s my right foot that’s injured. But I can’t do that because it’s my left shoulder which I dislocated, so I can’t put any force through it to use a crutch. And I’ve also got fractures in my left foot, which changes the way I move around. To a healthcare professional, it might look like I don’t know what I’m doing. Whereas everything I’m doing is because I have to risk assess which limb has the least potential to get damaged with every move I make. They can’t see my shoulder injury or left foot fractures though. And if they don’t ask…

Here’s what happened this week:

I went for an MRI, ironically on my left shoulder, and the radiographer didn’t ask what was wrong with it or how I cloud move it and pulled me by my injured shoulder to position me for the MRI. This really hurt and meant that I struggled with activities for the next couple of days which I could do myself before he did that. The joint is really unstable at the moment and I’ve dislocated it three times. He just assumed that because my shoulder wasn’t in a sling, it was just a “routine” scan. He apologised but the damage had already been done.

I went for my Covid vaccination yesterday and space was a bit tight in the cubicle. The nurse took my crutch off me because it was in her way. (Sidenote: don’t just take mobility aids away from people, it induces the same amount of panic as if someone just whips your handbag or phone away from you. It’s your lifeline!) Then she gave me my crutch back Afterwards but didn’t give it to me in a useful way, then stood in the way of me being able to manoeuvre it myself to stand up. She tried to offer me help on my left side, which meant I very quickly stood up twisting my right leg underneath me to try to avoid her pulling on my shoulder, which had already been injured earlier in the week by someone trying to “help” me. Getting up from a chair is actually a really difficult task when you’re wearing a moon boot anyway, let alone when you’ve got all the other injuries I’ve got too.

I tried to tell her that I had a system, but because she kind of launched herself at my left side I reacted instinctively and just wanted to get out as quickly as possible. I protected my shoulder, but I twisted my right leg and put weight through at the same time and things crunched in my hip/thigh.

This morning I couldn’t put any weight through my leg without a lot of pain. And I couldn’t walk at all without my crutch, whereas before I’d just been using it as support when I left the house. I was in a lot of pain and all of my fractures In the past felt the same so I decided that I should probably go get it x-rayed to make sure it wasn’t broken. Thankfully it isn’t, it’s muscular damage from having twisted it funnily. But now I can’t walk/weight bear without immense pain and I’ve been told to rest for the next couple of days.

For the sake of 30 seconds for each of these healthcare professionals this week, it’s cost me my independence, I’ve had to cancel some medical appointments in the next two days because I can’t physically get to them, I’ve had to increase my painkillers, my dad has to take time off work to help me because I’m struggling to get around and am massively at risk of falling over or getting stuck somewhere e.g. the toilet.

Today was “just“ muscular damage and it’ll only be for a couple of days, but that’s not really the point. In the bigger picture, this has made my life incredibly difficult. And the reason why is because someone assumed they knew the best way to help me rather than asking me. And when I did try to explain, I was met with the attitude of I should be grateful that I was being offered help, which is a whole other issue in itself.

Today the staff in a&e were very good at helping me. Here’s why:

⁃ they asked if I actually wanted their help (which is actually really empowering as a disabled person, even if it might not seem like it.)

⁃ they asked me questions like how can I help you get onto the bed/do you need me to…?/ am I in your way if I do X?

⁃ they told me they didn’t want to assume they knew best and to let them know what I needed

They had the full story summarised on my chart so they didn’t have to assume anything. But from asking the question to me manoeuvring in a way that was helpful and as painless as possible for me was less than a minute of their time. The questions could still be the same and applied to the situation regardless of how much information they had. Whereas for the sake of that minute yesterday, I had to spend 3 hours in a&e today and it’s had a massive impact on my life for at least a few days. Plus I’m in lots of pain. Which is never good!

Aside from getting a bit of frustration off my chest, I guess this post is to highlight that just because you think you might be helping, doesn’t necessarily mean you actually are. That an assumption is just as bad if not worse than no help at all, because of the consequences of it.That people are complicated and there is usually lots going on which might not make sense to you, but It’s still down to the patient to decide what’s best for them. At best, the patient has to potentially fend off help which they don’t want. At worst, we get injured. But it does feel a bit like I’ve been assaulted in a way, because someone did something without asking me first and I’ve got injured because of it. While there weren’t any malicious intentions, the outcome is still the same. Plus it happened twice this week. That makes future appointments more anxiety inducing for a while.

Now I’m going to top up my painkillers and hopefully try and sleep!

Doctors, stop laughing at me

There aren’t very many people in the world who you feel you can tell your most intimate problems or concerns to, and one of those people should definitely be your doctors. Except I find it really, really difficult to trust doctors who laugh at me.

This happens to me quite a lot. I should say it’s not just doctors, it’s also healthcare assistants, nurses, pharmacists, phlebotomists… pretty much any person in any sector of healthcare has done it at some point and it’s a guaranteed way to make me grumpy and not want to tell them anything.

Here’s how it goes:

⁃ They ask me a question along the lines of ”what medication are you on?” Or “do you have any medical conditions?”

⁃ I reply “do you need them all or just the ones for this appointment? I’ve got a list, because there’s a lot so it might be easier for you to decide”

⁃ I rummage in my pocket for my list, sometimes they look at me already like I’m some kind of hypochondriac because I’m obsessed enough to have a list. Truth be told, it’s because I can’t actually remember them all off the top of my head!

⁃ They take the list and look at it and make a comment along the lines of “oh wow that *is* a lot”.

I actually have no issue with this, because when I say I’ve got a long list in the first place, I say it with a bit of a sense of humour because if you don’t laugh at it a bit, it’s really depressing. It’s the bit that often comes next which bothers me:

⁃ “That’s *really* a lot”

⁃ “You’re too young to have all these conditions/medications”

⁃ “It would be easier to ask what you don’t have wrong with you/what drugs you’re not taking”

⁃ “I haven’t even heard of some of these”

⁃ “I don’t know where to start”

⁃ “Just bear with me while I write all these down, there’s so many”

And so on

All, 99.9% of the time, accompanied by some kind of laughter. The comments themselves aren’t the problem. It’s the laughing that comes with it.

I’m all for humour. I have to laugh at it all because otherwise I’d cry. But there’s humour and there’s laughing at me. One flippant comment is humorous. More than that feels like an onslaught.

I know why they do it. It’s because they don’t actually know what to say, are caught by surprise and are trying to buy themselves some time. They’re reading the list and not really paying attention but instead of sitting quietly and reading the list, they’re trying to fill the silence with stupid comments. The younger or more inexperienced the healthcare professional, the more it happens, and the more comments they make.

But they shouldn’t do it. Healthcare professionals are in the business of ill people. So why are they always so surprised when they get a person with lots of illnesses? Why do they celebrate their advancements in medicine which means they can save people and keep people alive a lot longer than before, but act all surprised when these people who shouldn’t have survived end up with multiple, chronic conditions? Why are they not better prepared for it? Yes, I’m young, but what am I supposed to do? Tell my body that I’m ‘too young for this old person illness’ and just ignore it exists? Where’s the empathy?

The time I spend with any healthcare professional is about me, and solely me. So their embarrassment or surprise or mood of the day shouldn’t even come into the equation. They should tailor their consultation to me, and if they can’t do that in an appropriate way, they shouldn’t be doing the job. Because healthcare is personal. One bad interaction with a HCP can be the catalyst for a whole host of more serious anxieties for that patient in future appointments.

There are two key points I think it’s important to highlight:

⁃ just because you’ve only seen me once, and are making that comment to me for the first time, doesn’t mean it’s my first time hearing it. When I hear the same things every time, sometimes several times in a week, it’s really wearing. And depressing. It’s also not very creative if people come out with the same ‘jokes’ over and over. As a medic, you need to think about where you come into the patient’s experience as a whole, and not just your limited time with one.

⁃ Considering mental health is being emphasised so much at the moment, this is something I think is really easy to address and would make a huge difference to my mental health. I don’t think it’s too much to ask for HCPs to think before the speak and to not put their embarrassment/nervousness/incompetence before the mental well-being of the patients. I’ve got some type of medical PTSD from so many bad interactions with HCPs, and it’s proving very difficult to treat because I’m constantly mentally preparing myself for the worst case scenario whenever I have to go to an appointment. And every time it happens, it reinforces it in my head.

This blog post was prompted by an experience this week with a junior doctor who was out of her depth. Any treatment plan, for me, comes with ridiculous risk factors or side effects, mostly involving potential death or serious illness. Add that to I’m already at a high risk of daily death anyway because of everything going on, my questions were based around ‘which way will give me a better quality of life with the least amount of impending death’ ie do I want to increase my risk of stroke (which is already high) or my risk of adrenal crisis by taking X medication? And every single time she replied, she laughed. Because *she* was uncomfortable. Who else am I going to ask these questions to? Does she think I like talking about it? I wasn’t laughing, so it’s not even like she could say she was taking cues from me. My mum was with me and god only knows how she felt about a) having to listen to her daughter ask these questions and b) trying to work out if the doctor’s answers were legitimate cause for concern or if it was all just a joke.

It’s not a one off experience. There’s a time and a place for humour. I feel like I’m more open to a laugh and a joke than the average person going to appointments, so if I feel upset by lots of these interactions, it must be worse for other people. If you’re unable to gauge the conversation properly, frankly, you shouldn’t be in the job. Healthcare professionals need to do better because the damage they can do with one negative comment could be the straw that breaks the camel’s back.