Having to fight to stay alive when it feels like your doctors don’t care

TW: death, mental health

NB: regardless of the flaws in the system, individuals making mistakes, staff having a bad day, human error, someone reading my file for the first time… etc, this post is about how interactions with health care staff have made me *feel*. Staff might not be able to do anything about a broken system, but they can do something about how they make patients feel when using it.

It’s impossible to have a debilitating, chronic illness without thinking ‘what’s the point in this? Is it worth it?’ at some point. When something completely takes over your life and affects every second of every day, making normal things seem like Everest, you wouldn’t be human if you hadn’t wondered what it would be like if you just didn’t wake up one morning. I read on twitter recently (and I’m paraphrasing) that people assume the worst thing that could happen is death, but having a life limiting, life threatening, chronic illness every day where you’re essentially ‘dying’ every day, is possibly worse. That made sense to me. I’m not suicidal right now, but when it’s really hard, it feels like being in some kind of purgatory.

So imagine being in a passive suicidal state (where you don’t want to die, but it’s feeling like hard work to stay alive both physically and mentally so you want an ‘end’), and then you have to argue with a doctor or other healthcare professional about what you need to stay alive.

For context: I’m steroid dependent, because I have adrenal insufficiency, which means I need to take steroids at set times in the day to stay alive. I won’t be able to stop taking steroids ever and I’ll die pretty quickly if I don’t have access to them. This week, I’ve had to argue with my GP about getting the right amount of my steroids prescribed, and the hospital because they cancelled my appointment with my endo last minute because he went on holiday and won’t reschedule it for any earlier than November. These issues come up a lot, particularly with my GP.

With adrenal insufficiency, you’re recommended to have 6 months prescriptions of steroids to allow for stress dosing and any possible supply issues. My GP surgery doesn’t understand this and this week said I couldn’t have any more than 5 days worth because:

– they misunderstood the reason I’m taking them, thinking it was a different condition

– they didn’t understand how stress dosing means I don’t have a rigid dose every day/month. It varies some months

– I needed a medication review (but I did one 2 weeks ago)

– they couldn’t find notes from my consultant saying my dose. There’s a lot of letters on my file, but there are at least 2 which say my consultant is happy with my management of my illness and that I know what I’m doing

– they want me to see my consultant before authorising it. Except that’s a whole other problem…

– they said the pharmacy had done it wrong

– they couldn’t find/didn’t understand the guidance I’d provided them about my illness from NICE and 2 charities

– the computer said I couldn’t have it

All perfectly reasonable things to query, were this the only time I’d made this request.

As for the hospital, one lady I spoke to had the response of ‘I don’t know what to suggest really, you’ll just have to keep going to a&e if you get really bad’. So ‘try not to die before november’, basically.

That’s the abridged version because me moaning about everything that’s gone on this week isn’t the point of this post. Sure, 90% of the people we (my husband did most of it) interacted with were polite, barring one receptionist on a power trip. But that’s not always the case. And it still didn’t stop the feeling creeping in:

They don’t care if I die.

What happens if I just stop fighting to get my steroids? If I run out after the 5 days my GP gave me? If I didn’t call an ambulance and didn’t go to resus? What would happen? I’d die.

Would these people care? Probably not, because they probably wouldn’t get told about it. They’d maybe only notice that me or my husband had stopped ringing them to moan at them, and they suddenly had more time on their hands.

So why should I care if they seemingly don’t? All they do is roll their eyes when I’m having the same argument with them. Nothing changes. They blame each other, they blame me, no one wants to step up and take responsibility. My husband has to go through the hassle of trying to sort it because I’ve got so stressed out by it all and, ironically, I don’t have enough steroids to waste on stress dosing because they don’t want to give me any in the first place. Or he comes home to me crying about it, worried that it won’t get fixed and I’ll end up in adrenal crisis. So I feel bad and worry I’m a burden, which makes it worse. And then because I’ve wasted time and precious energy on this, I don’t have any to spend on quality time with my family or friends, which affects those relationships and limits my quality of life. Because it’s the exact same problem every time, your brain preempts it, so you’re gearing up for a battle before even picking up the phone. But it still happens, nothing changes.

This happens at least 3 times a month.

It feels like no one cares how this affects my mental health. So when I’m already in my purgatory because of having a chronic illness in the first place, having to fight to stay alive is a bit like the devil poking you with a pitch fork at the edge of a lava-filled volcano. Do I want to keep getting burned by his pitch fork, and maybe get out of it alive? Or do I just give in and jump into lava?

It’s exhausting. I know what I/my husband needs to do to ‘fix’ it. I know who to complain to, who to argue with. But is there a point to all of this? Is it worth it? What would happen if I stopped arguing?

Healthcare professionals, when you deal with patients with chronic illnesses, you’re only a tiny cog in a bigger machine. But, if one of the tiny cogs breaks or doesn’t do its job properly, the machine starts to break down, and it takes a hell of a lot of work to sort it all out and get it going again. Your role in it might seem small. You might not have any influence over how the entire system works. But the way you deal with patients matters, and I need people to see that.

The system won’t get fixed overnight, but here are some things HCPs/admin staff could do to help me:

– don’t make me feel like it’s my fault or that I’m an inconvenience

– apologise, even if it’s not your fault. Saying ‘I’m sorry this has happened to you’ means a lot

– try to come up with a solution. Don’t just tell me the system is broken and there’s nothing you can do about it. Because there has to be, particularly if death is an outcome

– follow through on any promises you make. Don’t make me ring and chase you

– don’t blame other members of staff. Particularly if it’s not their fault. And definitely don’t try to play me or my husband off against me, which has happened

– take some of the chasing over for me. I’m always the go between- why can’t my surgery ring the pharmacy? Liaise with the hospital?

– I can tell if you’re lying to cover something up. So please don’t.

I’m assuming people go into medicine because they care about other human beings. Care doesn’t just mean dealing with me as an illness, it means showing me you care about me as a person, that it is all worth it and there is a point to my life. Make me feel like you care about me so that at least that battle is easier.

What I want more than a cure for my chronic illness

Obviously I’d rather have a cure for my chronic illnesses, but I’m using dramatic license here 😉

Chronic illnesses suck for obvious reasons- symptoms, restrictions, adaptations… there’s a long list. However, something I find almost as bad as having the illness itself is having to deal with the healthcare system. It’s an absolute nightmare. I can only talk of my experience with the NHS here in the U.K., and obviously there’s no perfect system which works for everyone, but it’s a common complaint amongst people with chronic illnesses- healthcare systems aren’t geared towards the chronically ill (ironically). They tend to work well for emergency care and routine things, but if you’re long term sick, it’s hard work. Here’s why:

Patient admin

This is the name I give to anything which I have to do to be able to get my treatment, but which doesn’t directly involve me talking to a doctor or doing tests. For example, ringing to chase appointments or repeats, copying letters and sending them to relevant people, managing medications, symptom diaries, logging results… there’s more I can’t think of right now. It’s relentless doing it every day, like a clingy child or a yappy dog.

Your life becomes ruled by it

There are many chronic illnesses which require continuous ‘maintenance’ every day. Ie you can’t just take your pills and feel better, you actually have to work at it. But not just that- your life becomes ruled by appointments, tests, ringing people… when you’re ill, you have to be available to attend appointments when you’re told to. If you reschedule it, you get put to the bottom of the list. It makes it hard to plan any type of life when you’re on waiting lists because you can’t risk delaying things if you’re away on holiday or make plans. Which brings me to my next point:

Nothing is ever done on your terms.

If you ring someone, they hardly ever answer and they ring you back when it suits them. Which means hanging out holding your phone all day. And if you’re like me, I can’t manage the phone at the best of times, never mind when I’m out and about. Like I said, appointments are scheduled at someone else’s convenience and you’re expected to be available and show up, even if it’s a nightmare for you logistically. I’ve got to the point where I’ve got my doctors’ annual leave marked on my phone calendar so I can work things around them. Hilariously, I haven’t been able to book my own holiday for about 3 years because I’m too busy working around everyone else. But, the attitude of the system is, ‘you’re sick, why would you need/want a holiday anyway?’

Waiting

There’s so much waiting. Waiting for people to ring you back, waiting for the next test, waiting for the follow up, waiting for the next referral. Then there’s the actual sitting in hospital waiting rooms, waiting, waiting in queues for blood tests, waiting for someone to collect you to take you home…

You have to be really organised

What do most people want to do when something is getting a bit much? Bury their head in the sand and get away from it. Or go on holiday (ha!). But you can’t because you have to keep on top of everything. If not, you might die. So it’s a no-brainer really. But too often, administrators say to me ‘oh I can’t keep track of all of your appointments/tests’ and I want to scream that they’re only doing one department in one hospital whereas I’ve got several across 3 hospitals, let alone my primary care.

Having to be polite all the time

There is a huge culture in the NHS of ‘you don’t know what type of day your nurse has had so you should be nice to them’. And it drives me mad. Because a lot of staff seem to be now forgetting that patients also have crappy days too, *and* we’re the sick ones. A lot of the time, I don’t feel like massaging my doctor’s ego because he’s grumpy, but if I don’t, I don’t get what I need. It’s exhausting having to be the model patient all the time when you don’t feel like it, not to mention really bad for your mental health. Particularly when you’re dealing with a fragmented system.

You have to be the go between

The NHS, despite its title of a ‘national’ health service, isn’t actually a national service. You can’t just walk into any a&e or GP surgery and have someone pull up your records. I live on the border of 3 hospital trusts, but all are geographically close to each other. However, if I want one doctor to see another doctor’s test, I have to go ask the first doctor to print it, collect it, and take it to the next doctor- the doctors in one trust can’t see anything the doctors in another trust do. Which means lots and lots of repeating tests, letters, consultations etc.

But I’m not a doctor, so if I take a print out and get asked questions about it, I don’t necessarily know what any of it means. And they don’t necessarily give me everything that’s on my file to take between doctors. It’s like Chinese whispers.

Computer systems which don’t work

The NHS computer is ridiculously stupid. I could write a dissertation on it. For example, this week alone, it’s managed to only half complete a referral in that it allocated me an appointment, but got stuck and didn’t do the rest of it eg tell someone they had to send me a letter and text, so I didn’t know it existed. And I want to order pain killers on repeat prescription but I can’t put them through on the same day because the computer doesn’t like it. However, if I put them through on separate days, it’s fine with it. Or it really hates my married name, so periodically churns our fines for prescription fraud because it’s forgotten that I got married. But only sometimes, not all the time. Sometimes it can’t find me when I get to a&e, despite going there *a lot*. My favourite is when it randomly adds medical conditions that I don’t actually have, which just adds to the drama of an emergency visit.

People can’t just override the computers and it tends to be a limited amount of people who can override them. So you spend ages hunting down the one person who can fix something for you, waiting for phonecalls of people getting back to you, only to find they’re on holiday or off sick and you need to wait until they’re back. Or that a referral got stuck on someone’s desk and they never did it in the first place. It’s also stupid in the sense that it manages to book you in for 2 appointments at the exact same time in the same hospital relatively frequently. If you’re admitted as an inpatient, you’re not allowed to attend outpatient appointments because the computer can’t handle it. If the computer says no, it’s hard to persuade it otherwise…

Red tape

If it’s not the computer putting up barriers, it’s red tape. Admin aren’t allowed to make clinical decisions, but clinical people aren’t allowed to do admin things. So you’re the go between again. But as a patient, you’re not allowed to sort some stuff. So you’re back to hunting people down who can. I regularly have to do blood tests twice, in two separate places because the NHS budgeting says I have to, even though it actually costs the NHS twice as much to do it that way, let alone the inconvenience for me.

There are far too many things which are a ‘tick a box’ thing and completely unnecessary. Eg medication reviews with an ANP who isn’t remotely qualified for any of my conditions. Or an asthma review with my GP even though I see a consultant. Or, even more stupidly, every year I get told I have to do a diabetes review, despite not being diabetic. Because the computer says so, and no one can override the computer…

What do I want almost as much as a cure for my chronic illness? A healthcare system which actually works for chronically ill patients. This is an abridged version of some of the issues I face, and even then it still turned out quite long! I’m grateful that I don’t have to deal with insurance on top of everything else! I can’t even remember when I had a week where I didn’t have to fight with it somehow. And even when I don’t have a week of appointments scheduled, I end up being sent letters or contacted to deal with something. There’s something to deal with at least once a week, usually 4-5 times per week, and more if I have to wait for other people to get back to me.

I’m fortunate because I can work out where the faults in the system lie, and either me or my proxy can make it work for me. But not everyone is in a position to be able to understand how it works or be able to advocate for their care. Considering the NHS is in the business of treating sick people, it really needs to get better at improving the system for the chronically sick.

‘People should view mental health the way they view physical health…’

‘… if you had a broken leg, you’d take medication, so taking medication for a mental health problem should be the same.’

Or

‘Telling someone to snap out of depression is like telling someone with asthma that there’s plenty of air so they should be able to breathe’

I can’t tell you how much this phrase (or similar ones) irritates me. People should absolutely not view mental health in the same way as they view physical health, because a) they’re completely different, just like no two physical illnesses are the same but b) more importantly, people don’t view physical health in a good light in the first place!!

I have both physical and mental illness(es). I’ll sum up my thoughts at the end, but to start, here are some phrases that are regularly said to me about my physical illness, which people assume are just said about mental ones:

‘You don’t really need those tablets/inhalers. Your body would be much better without them’

Despite me saying ‘I will die within 48 hours’, I’m still regularly told to ‘just stop taking steroids’, I still hear this at least once a week. By both medically and non-medically trained people. I won’t feel very well if I don’t take my antidepressants, but I won’t die just because I haven’t taken them. But I will if I don’t take my steroids.

‘If you ate more healthily and exercised more you wouldn’t have X’

Why is it always kale? Why can’t the magic diet for curing illness involve a big dominos pizza and a McDonald’s milkshake? Again, I hear this at least once a week in relation to my physical illness, just like people who have depression are told they’ll feel better on a green/clean diet. Besides, no one is touching my diet unless it’s my endo or a dietician.

‘You shouldn’t feel ashamed to talk about it’

People don’t like talking about things that make them feel uncomfortable, and any illness which is long term or chronic, whether physical or mental, makes people feel uncomfortable. It’s the notion that they can’t immediately ‘fix you’ there and then with their advice about diet and lifestyle or by buying you kale for dinner which is the actual problem, not whether it’s a physical or mental problem.

‘If you looked after yourself better/hadn’t done X/lost some weight/had a more healthy routine etc then you’d be better’

Ie you’re not helping yourself. Usually said after you’ve flatly turned down their 95th offering of kale/advice. Aside from a few cases, it’s hardly ever the person who’s sick’s fault that they’ve got any type of illness. Full stop.

‘You’re not trying hard enough/snap out of it’

Normally said when your illness gets in the way of something they want to do. You feel like you should be apologising to other people all the time as it is, for being an ‘inconvenience’. Do people really think if it was a case of ‘just snapping out of something’ we’d not have done that by now? Is will power going to make my adrenal glands start working again? Nope. But a person telling me I’m useless will definitely make things worse.

‘Do you really need X’ or ‘do you really need to do that?’

There are many things people with chronic illnesses do to make their life easier/to manage their illnesses. And most of them aren’t obvious to other people. The advantage of mental illness, is that a lot of the coping strategies are as invisible as the condition is, so you actually get bothered less by other people about things that you’re doing to cope. With a mobility aid, it’s a visible reminder, and every person and their dog seems to feel the need to comment on it. ‘What have you been getting up to?’, ‘do you really need a wheelchair?’, ‘it’s not that far, why can’t you walk?’

‘you can’t be that ill if you did X yesterday’

Chronic illnesses are like paint colour charts. They have different shades. Some days they’re beige and and in the background, other times they’re hot pink and glaring you in the face. Just because something was possible one day doesn’t mean it is the next and just because I couldn’t do something one day doesn’t mean I won’t ever be able to. That applies for any chronic illness.

The stigma around mental health illnesses has a lot less to do with the fact that it’s a mental illness and more to do with the fact that people are talking more openly about having a chronic illness. It’s that it’s chronic and might not ever go away that’s the issue. People struggle to accept that something can’t be cured, that medicine isn’t some kind of witchcraft and that you could potentially be chronically ill forever. And, because mental health illnesses are actually pretty common in an age where we’re constantly putting ourselves under stress and trying to keep up with appearances of our ‘perfect lives’ on social media, there’s a stigma around saying you feel depressed or anxious because others view it as a sign of weakness.

Side note: remember, being depressed and anxious temporarily are human emotions which you’re supposed to have. It’s if they’re chronic that’s the problem.

So my first point is, whether it’s mental or physical isn’t the problem. It’s the fact that it’s long term and makes people feel uncomfortable that is. My second point is, it’s to do with what people can understand or empathise with.

Everyone knows that a broken bone or cancer or pneumonia are ‘bad illnesses’. Pain, cancer treatment and not being able to breathe are obviously big problems. And, in a lot of cases, they’re curable. People like curable things.

It doesn’t seem to make any difference if there’s a visible prompt, like a plaster cast or hair falling out, or not. Although it can help some people to empathise. I say this because I get more empathy from people when I talk about my tendency for stress fractures, my asthma or my anxiety than I do when I talk about my adrenal insufficiency. Asthma, broken bones or anxiety are all well known illnesses, adrenal insufficiency isn’t. It’s hard to empathise with something you don’t understand, but my adrenal insufficiency is about a million times worse symptom wise, can kill me super quickly, and controls my life. Asthma, fractures and anxiety are just annoyances in comparison. But other people understand them better which means I get fewer of the comments I mentioned above in relation to those than I do about my AI. If the vast population ‘only’ (I mean that as in you have one illness rather than 10, not that it’s inferior) has depression OR anxiety and they hear those comments, of course they’re going to think the stigma is just around mental illness, because they don’t have any experience to compare it with.

The good thing about people going around saying ‘it’s ok not to be ok’ (which also drives me mad) is that it’s at least opening the dialogue about how our health isn’t just a ‘you’re either cured or sick’ notion anymore. It’s a sliding scale and changes all the time. Because mental illnesses are now really common, they’re being talked about more which means that we’ll hopefully see a change in the stigma around long term illness in general. Because it’s definitely not the distinction between mental and physical illness that’s society’s problem here, it’s how people view any illness and their health in general.

Here’s hoping that people’s attitudes overall to chronic illness and disability changes, so everyone can feel like they can ask for help or talk about their health without feeling like they’re going to judge. In the meantime, don’t offer me kale 😉

(Ps I actually like kale!)

I slipped in the shower

It’s been a bit of a week…! At some point in the last week, I got a stress fracture in my foot. All I did was stand up from sitting on the sofa and heard a big crack. It didn’t hurt, but I remember thinking ‘remember this for in about 3 days if your foot starts to hurt’ and lo and behold it did!

Long story short, I left it a few days and then went to urgent care to get it checked. Nasty stress fracture. The very nice nurse didn’t think I’d broken it because all I did was stand up, but because of my medical history of stress fractures, she sent me for x-Ray. And then fitted me for a walking boot and sorted me out with a fracture clinic appointment.

So it had been a bit of an eventful week anyway. The foot is relevant to the shower, I promise! One of the perils of taking steroids is that it makes your bones brittle. I’ve already got some bones with osteoporosis in, which we know from my DEXA scan last year. The rest are osteopenic (so weaker). So imagine an elderly person and how weak their bones potentially are and that’s pretty much me but aged 32. It’s a catch 22 though- the weaker the bones, the longer it takes to heal, requiring more cortisol, which is why I take steroids in the first place. But there’s a fine line between dosing enough to heal the fracture and dosing too much and therefore increasing your likelihood of fractures.

I’d been joking to my friend that I needed a more dramatic story because standing up was about as lame as it gets for breaking a bone. I was joking, but my body clearly decided that it hadn’t had enough drama for one week and decided to add some more today.

The boot thing means I can take it off and wash/sleep/sit normally. Much better than a plaster cast. But it has changed my center of gravity and the way I move when I wear it. Technically I’m not supposed to shower when I’m alone in the house because of this exact reason, but if I followed all of the rules I’m supposed to follow I’d pretty much never leave the hospital and be confined to bed for half my life. Plus it’s really hot and sitting in the shower helps cool me down. However clearly I need to rethink this while my foot is broken!

Anyway, I was just finishing washing and got ready to stand up from my shower stool. I have ways of doing everything so it’s pretty much automatic but it usually involves going right foot first, which is my broken foot. ‘No, don’t be a moomin, stand up with your left foot first’ I thought. This didn’t work (Remember I said my center of gravity had changed?) and I lost control of my left foot and then couldn’t stabilise myself with my broken right foot so I fell backwards into my shower stool, landing on my backside, twisting my knee and smashing my ribs into my shower stool. Oh the irony of a mobility aid injuring me. I did, however, manage to avoid hitting my head because I protected it as I crashed to the floor. Can we all just take a moment to recognise how impressive that is!!

It still bloody hurt though. And the shower was essentially drowning me by now, so with water and soap in my eyes, I somehow managed to get myself off the floor (also impressive) and do some checks.

• I didn’t hit my head. Good thing
• I didn’t feel dizzy. Also good
• I wasn’t bleeding anywhere
• I didn’t have any massive pains so nothing immediately obviously broken

Ok, these are all good things! Now for the next checks. Adrenal insufficiency means that my body doesn’t respond to shock and injury the same way as everyone else’s does. I still make adrenaline, which helps out a lot in situations like this, but I don’t make the cortisol which should come with it. So I wasn’t ‘fine’ yet.

I’ve never actually injured myself badly since I got diagnosed so I don’t have any experience to fall back on. I didn’t feel like it was an ‘I need to inject moment’ but I clearly was going to need something. So I leapt out of the shower as fast as my broken foot and now hurting ribs, tailbone and knee would allow and went to find some hydrocortisone. Unluckily for me, I’d taken some last thing before bed so I hadn’t replaced the emergency tablets from my bedside table. Argh. So I had to go to another room to find it, flashing all my neighbours in the process because I hadn’t picked up a towel.

Why were my curtains open? Because there was a huge spider in the curtains and I wasn’t going to risk being eaten by the spider closing them before my shower. I bet the spider had a right laugh! Naturally I’m blaming it for all of this.

I swallowed 10mg and sat on the bed. Then I realised I still had soap in my hair so had to get back in the shower to wash it off. If I was going to have to ring an ambulance while naked, I may as well be fully clean first!

Then I realised my mistake because my right foot was protesting about having been walked on in my naked rampage to find hydrocortisone and the whole reason I’d fallen in the first place was because my left foot was stupid. I got up slowly off my shower stool, didn’t quite fall over this time and went to sit on the bed, picking a towel up this time.

Ok, I’d sorted the main problem (ie not going into shock and dying), now I had to think about it logically. It became like one of those games at girl guides; *fortunately* I bashed my ribs where they usually hurt anyway, so it’s not like it’s a new place to hurt. *unfortunately* it’s right above where I think my osteoporosis bones are. Fortunately, I’ve got a friend who’s a nurse and my chiropractor to ask advice from. Unfortunately, if they say I need checking, I’m by myself and have no idea how I’d sort out a trip to a&e. I was being sensible because I do not want a stress fracture in my spine.

It turns out that having asked both of them, it’s a case of keeping an eye on pain and bruising/swelling over the next 24 hours. The body’s pretty good at compensating to start with (all the adrenaline) so it doesn’t always show up straight away. But the fact that I don’t have any immediate pain is a good thing.

Hang on, so I break my foot by standing up but I might have got away with breaking bones from a pretty horrendous fall?? What is wrong with my body?! *touch wood*

I got dressed and then found my blood pressure monitor, thermometer and blood testing kit. Unfortunately, I’d packed them because my husband is working away so I’m staying at my friends’ overnight. Why do I need babysitting and take a ton of medical stuff? Because of things like this happening! So unfortunately I had to unpack my bag to do my obs. Everything seemed good and I was feeling a bit battered but otherwise ok, so I must have guessed the hydrocortisone dosing right (for now).

It’s been a few hours now and I still feel alright. I’m sure it’ll hurt a lot tomorrow but I’m cautiously optimistic that I just bruised myself (although I wouldn’t say no to some positive vibes/prayers!). I’ll play my hydrocortisone dosing by ear for the next couple of days because extra pain burns cortisol fast anyway, but I also gave myself a bit of a shock so that might catch up with me at some point too.

Fingers crossed!