Can we stop saying ‘fighting and losing battles’ with illness?

Or at least think about how we talk about illness and the words we use?

Here are some phrases which get used a lot about illnesses:

– fighting cancer

– lost his/her battle with <insert illness>

– s/he’s a fighter, s/he’ll be ok

– s/he’s going to beat it

– s/he lost/won the battle

There are more, but you get the idea. I really, really dislike these phrases. I’m aware they come out of a place of love, of solidarity and support and are said to show how courageous the person is with the illness. But they’re actually pretty damaging for lots of reasons.

‘Fighting’ implies that you can do something about illness. If you’re taking your meds and following your treatment plan in whatever form it takes, you can’t do anything more. Closing your eyes, crossing your fingers and clicking your heals together 3 times while whispering ‘I can fight this, I’m a fighter’ won’t make the slightest bit of difference. Bodies are amazing, but there’s only so much they can do, even combined with medicine. Illnesses win, despite our best efforts. But what you’re left with if your illness declines and you’ve had people tell you how much of a fighter you are, is this niggling feeling that you didn’t fight hard enough. You feel like you’ve let people down. And you don’t need guilt, stress and anxiety on top of everything else.

You didn’t lose a battle if you didn’t stand a chance in the first place. No one says the Japanese lost their battle with the atomic bomb when it was dropped suddenly on Hiroshima in the Second World War. They were ambushed, they didn’t see it coming. That’s what happens with illness. Sometimes you don’t stand a chance. To say that someone lost their battle when they die is really patronising and belittling- it implies, again, that they didn’t do enough or didn’t mobilise the right forces. I know it’s usually said to indicate how long someone has been sick for and how challenging it was, but there’s still an element of ‘blame’. And we all know how people love to tell chronically ill and cancer patients that eating kale, drinking smart water and taking up yoga will cure them of their illness, right?

Positive thinking doesn’t cure illness. You can be positive about your treatment and do all you can to physically and mentally help yourself, but positive thinking alone doesn’t cure anything. It actually just puts you under an immense amount of pressure to be ok with everything that’s going on, which is unrealistic and impossible to do.

Chronic illness isn’t a series of battles with respite, it’s constant. Some treatments work in cycles, or you have periods of time between appointments and more tests. Or your illness is here to stay and you have to learn how to live with it. Regardless of how it manifests, people seem to have this idea that people ‘fight’ illness for a pre-determined amount of time, then go back to their ‘normal’ lives and get ready for the next ‘battle’ with renewed energy. But that’s not how it works. Let me tell you, it’s constant. You don’t get a break. You never feel rested, pain or symptom free or ‘go back to normal’. Some people are very lucky in the sense that they might have normal ish periods of time, but they probably also have horrendous ones too which more than make up for it. Imagine having a cold constantly times by 10 and how enthused you feel by someone telling you that you’re ‘winning the battle’ when actually you feel like you’re waist deep in mud in a trench kind of hoping a stray enemy bullet puts you out of your misery. But even if you were at breaking point, you wouldn’t feel like you’d ever be able to admit it because you’re supposed to be a fighter, battling against your illness so you can win the war. That’s what people keep telling you anyway… and if you’ve not got cancer, you should be ‘grateful you don’t have cancer’. And if you do, there’s always kale and yoga you should be doing 😉

It implies that our lives are a constant battle field. Illness sucks but it’s still part of someone’s life. You hear about cancer kids liking the familiarity and routine of their treatments because that’s all they know. Saying that everything is a constant fight implies that our lives aren’t as good or are on hold or chaos-ridden. Which they might be, but they’re still valid and we don’t necessarily want to be reminded of the chaos when things are seeming slightly less so. To say people are constantly fighting illness suggests people waiting for something to end (in either death or cure), when really people with illnesses are trying to get through life just as much as anyone else is.

It’s a very British thing to trot out phrases you hear and think that they’re ok and positive to say. It doesn’t help that big media outlets like the BBC are particularly bad for saying all of the phrases above, so they kind of get engrained in our subconscious. Illness in whatever shape or form is hard and all relative to circumstance. Support doesn’t have to be telling people how brave and courageous they are for fighting illness. Or kale and yoga! It can be a lot more subtle than that. Humour goes a long way 😉

A negative and positive experience with the NHS

I’m a regular NHS service user so I have both my fair share of positive and negative experiences with the NHS. Sadly, my experiences have been mostly negative recently, which makes having a long term, chronic illness a lot more stressful and upsetting than it needs to be.

Something, no one is very sure what exactly, is sapping my cortisol levels and making an already very tricky illness to manage an impossible illness to manage. This week I admitted defeat and decided I should probably go to my GP with it because I thought my UTI from a few weeks ago might have been coming back and I didn’t want another adrenal crisis. My husband made me an on the day appointment and even said to the receptionist that I’m a complex case, so could I please have either an appointment with a GP or a telephone call if a GP wasn’t available.

I arrived and got seen by an Advanced Nurse Practitioner. The only thing that went well about this appointment was that her clinic was actually running on time. Here are the issues I had:

  • She didn’t tell me her name or her job role. It made it hard for me to gauge how much detail I needed to give her about my conditions
  • She announced within about 30 seconds that she didn’t know what to do with me. I don’t really mind people saying this because it’s better than people blindly stabbing in the dark, but there’s a way to do this, and being dismissive and making out like I’m an inconvenience isn’t the way to do it. Also, I still have feelings about being sick, even if I am an expert patient. I do actually need reassurance that I’m doing things right and I needed some decent advice this week because I’d spent a month trying to manage it on my own and nothing was working. It would be nice to approach a health care professional and feel looked after rather than feeling like I’m responsible for everything.
  • Because she’d decided she didn’t know what to do with me, she told me I needed to come back at 5pm (it was 10am) to see the GP. You can see why I got a bit grumpy about this… plus it’s a challenge me getting to the surgery. And if I needed hospital, which it turns out I did, being admitted at 5pm would be a nightmare. But there wasn’t a GP on site at 10am for her to check with (NHS cuts).
  • So I said ‘can you do my obs and dip my urine and I can tell you what the GP will say if that’s the case’. Which is just ludicrous the fact that I’m analysing my own test results.
  • Except by the time I’d done the tests, she’d decided she didn’t really want to be responsible for me so she was sending me to a&e. She made me feel like she was worried about her job and advice more than worried about what was best for me as a patient. I tried to get her to send me to the GP liaison unit at the hospital but she insisted a&e. I didn’t feel she was directing me to an appropriate service, that a&e was the easy option for her.
  • Then she tried to rediagnose some of my conditions. And made comments like ‘you’re not doing very well are you, you’ve got lots of things wrong with you’.
  • She kept asking me why I hadn’t contacted my specialist helpline and I kept explaining because they’d just tell me to go to my GP to rule out infection first, which is exactly what I was doing. I felt like she was just trying to pass me on to someone else so I wasn’t her problem anymore.
  • The printer wouldn’t work so she had to get the receptionist to print it. Where she very loudly said my name to the whole waiting room and then had a conversation with the receptionist about the sheer size of my medical history summary (and had a laugh about it) and then said ‘they’re going to love you at a&e when you turn up with this’
  • My last experience of hospital was pretty bad so by now I was really wound up and grumpy. And feeling ill. Just what everyone needs, but because my experiences in hospital have needed me to argue with lots of people recently, I was getting pretty anxious by this point. I decided I wasn’t going back to the hospital which had caused me a lot of stress recently but I’d go to the one where my endo was based so they could page him instead if they needed to.
  • So to the positive! I got seen pretty quickly in a&e, partially because of my adrenal insufficiency but also because the ANP had written that I had gastroenteritis on my referral (I didn’t, I told her I didn’t but she wasn’t listening). Which meant I also got put in isolation which suited me and my friend fine! Here’s why this trip was so positive:
    • Lots of hello my name is from everyone.
      A student nurse who triaged me didn’t know anything about my conditions and said so, but then said ‘tell me what I need to know and then I can ask more questions if needed’.
      They sent me a senior doctor who took a full medication list and patient history. Crucially, he listened to my steroid schedule, which at the moment is really confusing, and wrote it down properly. Sounds basic, but the other hospital have got all that wrong recently a lot.
      My bloods and tests were done speedily
      I told the triage nurse about my BP going up when I’m ill and she actually passed this information on. Sounds basic but it doesn’t happen!
      I got an appropriate adrenal pathway for what I needed (fluids, steroids, anti sickness, pain relief, endocrine bloods). I was asked by the doctor if I agreed with it, but he made the decision. I was so relieved! Everyone is always very happy to tell me when I’ve got things wrong in hindsight or tell me off for asking for IV steroids when I ‘don’t need them’ (usually wrong), but very few people actually make decisions for me or give me decent advice.
      No one made me feel like an idiot for having ‘mismanaged’ things. They acknowledged I’d done the best I could by myself. Which gave me a bit of a confidence boost- it’s so stressful being responsible for such a volatile condition and being left to my own devices a lot of the time. Especially if I get it wrong I die…
      The next consultant who came to see me had clearly either read my file in detail or had paged my endo to ask for advice because the discussion we had was really good and specific to me. I don’t have textbook AI and whenever I ask about what to do with my steroids people usually just say ‘I’ll let you decide’ or fob me off. He actually came up with a very good and logical plan which is a bit of a contradiction to the sick day rules but made sense to me. I’ll write another post about that though.
      My blood work was all fine and no sign of infection. But the doc said I needed the protocol I’d had because ‘clearly my body was doing something and I needed extra steroids’. This never happens. At this point I’d usually have been told off for stress dosing and told to taper immediately and be made to feel like an idiot. I told him he was the best a&e Doctor I’d had for a while and he really was!
  • Ultimately, I usually get the care I need/want from the NHS because people get a bit freaked out when I ask if they’re 100% sure I don’t need the treatment I’m asking for because the end outcome for me is death if they get it wrong. But why do I need to be in a situation where I have to point this out to people?

    So if I get the care I need every time, what is it that makes my experiences either positive or negative? Attitude. Patient communication. Compassion. Had my ANP talked to me more professionally, I wouldn’t have left feeling so frustrated and uncared about. She made me feel like I was an inconvenience, that I was a problem case, too complicated for her to deal with. She talked about me in front of a waiting room of people and made fun of me for my poor health. I don’t feel like she was acting in my best interests, more like she just wanted rid of me and if she sent me to a&e someone else could deal with me.

    Whereas the people who gave me a positive experience tried to understand me. They admitted they didn’t know everything but were still in charge of my care, taking the pressure off me. No one made me feel silly about having to be there and they reassured me I’d done the right things myself. Instead of sharing their stresses and worries about my condition like the ANP did, they did their own reading and research or asking questions away from me so that they could give me confident answers when I asked for advice.

    The way you approach patients and communicate with them is what makes the experience positive or negative. If things go wrong but someone has tried, I mind a lot less than if someone has been arguing with me every step of the way. An apology goes a long way. And, it doesn’t take any extra time to be a kind and caring individual.

    What IV Steroids Feels Like

    There was an episode on House where a man has been basically paralysed and wheelchair-bound due to severe lack of cortisol from having undiagnosed Addison’s disease. House gives him an injection of cortisol and he’s able to get up out of his wheelchair within minutes. It makes for good TV, right? The doctor who ‘found’ cortisol said it was like watching Lazarus rise from the dead when he gave it to patients dying and they were up and eating within an hour. It’s like a miracle!

    Except it kind of is like that. A trainee paramedic asked me what it feels like the last time I called an ambulance and he was treating me. I’m pretty sure in ‘normal’ people it would probably make you feel sick and dizzy and anxious and have a fast heart rate (because you don’t need it), but this is what it feels like to me:

    • It’s like being in a swimming pool with weights attached to your arms and legs and your head’s underwater and someone’s trying to give you instructions from the pool side and you can’t hear them properly. So you’re fighting against the weight and trying to swim upwards because you can’t breathe. And then suddenly the weights fall off and your head breaks the surface of the water and you can hear what they’re saying, can breathe again and aren’t dragged down.
    • Or you’re lying underneath something heavy and it’s crushing every bit of you and getting heavier so you can’t breathe and the pressure is getting to the unbearable point and suddenly someone pulls off the heavy thing and the pain and pressure goes away.
    • It’s a bit like ‘backwards’ day. You want to move your left arm but your right arm moves instead. Or you go to talk and it’s like being at the dentist after a filling needing anaesthetic and you can’t make your mouth make the words properly. And then your brain starts following what you want it to do all of a sudden and you can suddenly articulate yourself really well.
    • Imagine having the worst flu ever. The type where someone says ‘if you sit up for 10 seconds, I’ll give you £500’ and you just can’t do it because you’re so exhausted. But then you feel like you could do 50 sit-ups for that £500, easily.
    • It’s like watching a film and seeing things happen but not being able to have any control over the storyline. And then you jump onto the film set and can actually be part of the storyline and can change the pathway by getting involved.
    • Or you’re watching tv on a small black and white tv which you have to hit the side of periodically to get the picture back. And then a fairy magics a HD full flat screen and you suddenly see everything in high definition for the first time.
  • It’s literally like a switch. You feel like you’re dying and then you feel a kind of warm feeling and pain gets better, your brain gets clearer, you feel less dizzy and drowsy and you have more energy. I stop feeling anxious pretty much immediately and my ‘old’ sense of humour comes back. IV steroids are amazing. It just really sucks when they wear off because the come down is horrible- like an addict detoxing but worse because you actually need the cortisol to survive. Don’t get me wrong, it doesn’t make me able to function like I used to, but it definitely makes me feel a lot better temporarily!
  • Why aren’t there disabled emojis?

    Today is world emoji day. I’ve had this debate with people verbally before but never written it down. There’s an emoji for practically everything. If you identify as a ghost, zombie, or animal or if you’re in a gay relationship, a black female or a baby boy then there is an emoji for you.

    But there aren’t any emojis representing disability, except for the ‘wheelchair symbol’ mikes down the list.

    There are also aren’t any emojis for people with ginger hair either, mind you.

    Why though? I fall into the invisible disability category most of the time, but where are the wheelchair users, cane users, blind or hearing impaired emojis? And the rest. I read in the news recently that they’re ‘coming’ but considering there’s an emoji for taking a selfie, which is relatively new, you’d think that there’d be emojis for disability which we’ve been seeing for decades.

    The only thoughts I have about it are:

    • People still see disability as a ‘weakness’ so they don’t want to highlight it
    • Others have this silly notion that people ‘identify’ too much with their disability and it becomes their entire being. But people identify as being gay and let it become their entire being too, but that’s seen as ok.
    • Some might see it as poor taste eg making fun of disabilities
    • People are just not equipped to deal with disability. It’s something we ‘shouldn’t be talking about’.
    • To some, disability is seen as a minority. The reality is, it’s only because disabled people tend to be hidden from view.
    • You can’t cure long term disability. Giving emojis is a permanent thing, and in doing so, able bodied people might see it as ‘giving up’. And that makes non disabled people feel uncomfortable.
  • So while I don’t feel the need for an emoji to express my disability, it is unfair that they don’t exist. Sort it out quicker!
  • Half way through my thyroxine trial

    I started taking levothyroxine a couple of weeks ago on a 5 week trial. I haven’t actually noticed feeling any better but it’s been a bit of a funny couple of weeks anyway. Here are my observations so far:

    • Thyroxine lowers your cortisol level which skewed with me a bit to start off with. Well, actually a lot. I contemplated hospital or an ambulance within the first 24 hours of taking it because I was really ill.
    • Then I did some research about the way the packet says to take it and what endos actually say about taking it. So instead of waiting 60 minutes before eating and having my steroids, I waited 30 minutes instead, which made it a bit more manageable cortisol wise.
    • However, you’re not supposed to take calcium tablets within 4 hours of having had thyroxine because it affects the absorption rate. Once I found this out, it helped manage the drops in cortisol even more, but it does mean a lot of extra alarms for meds. It would have been useful if someone had actually told me all this (endo, GP, pharmacy, the patient leaflet) rather than it being down to my research but never mind!
    • I’ve not been to hospital for an adrenal crisis in about 6 months, I haven’t had any significant infections or illnesses in the past 6 months and I’ve never vomited before even with past adrenal crises, and all this happened a week after I started the thyroxine. However, that could all be a coincidence because it was also a ridiculously hot heat wave and I had a very stressful week coming up.
    • Thyroxine makes your bones more brittle and my stress fractures have started hurting again this week. But I doubt that I’ve been taking it for long enough for that to make a difference so quickly so it’s probably more my steroids are wrong because something (maybe the thyroxine) is making my cortisol drop.
    • I cried every evening for about the first 2 weeks after starting it for no reason. Not normal for me! I’ve also had diarrhoea every day since I started taking it. But, again, could be coincidence because of everything else going on.
    • I have been sleeping for longer though. And I think it’s better quality sleep.
    • My husband doesn’t like me taking it much at weekends because I now have to be up and eating breakfast at 7.15am because if I don’t then I end up with serious stomach issues. And I can’t push the tablet time later because that’s a silly idea anyway (better to take it at the same time every day) but my dosing schedule is now so crazy I don’t actually have any other time I can take it so everything else can be taken at the right time!
    • I don’t like not being able to eat or take steroids after 2.45am. Because my stomach has to be empty for 4 hours when I take it but I keep waking up with low cortisol and hypo symptoms and not being able to do anything to fix it. So better quality of sleep for most of the time except for those occasions when I’m awake from 3am onwards.
  • I’ve got another two and a half weeks taking it and then a blood test, followed by my endo review in August. I don’t know if it’s improved my symptoms or not, really because, like I said, it’s been a funny couple of weeks anyway. So I’m open to seeing how the next couple of weeks go and discussing it with my endo because so far I haven’t found it to be either positive or negative particularly. Fingers crossed it sways towards the positive though! 🙂
  • What I learnt from watching ‘Brain on Fire’

    I’ve been doing a lot of lying down browsing Netflix recently so have been watching some random documentaries and films. One of the ones I watched was a film called ‘Brain on Fire’.It’s about a woman who starts to experience neurological symptoms like seizures, absences, psychosis, mood swings and eventually stroke like symptoms. But no one can work out what’s wrong with her and they go down the ‘it’s psychological’ route and try to get her committed to a psych ward. Her parents keep fighting for her and found one doctor who believed her and eventually she gets diagnosed with a rare autoimmune brain disorder. It’s treatable. It’s also based on a true story. The reason I found this interesting was because before I got diagnosed with adrenal insufficiency, I had many doctors tell me that they thought my problems were psychological and refused to treat me- I got made out to be a drug seeker for steroids at one point. Like her, I felt like I was dying and no one was listening. And, in the same way, the only reason I got diagnosed was because one respiratory doctor said ‘I believe you’ and spent 2 weeks running every test possible until a completely random one showed I had adrenal insufficiency, which wasn’t even his field of practice. But before that, I was treated like I was mad. People ‘humoured’ me when I went to a&e for a while, but the more I showed up (every week at one point) and the fact that one doctor wrote about my ‘clear psychological issues’ on my file meant that people became more and more rude and point blank refused to treat me. But even if I was experiencing psychological symptoms, there’s no need to treat me like that, clearly I still needed help which I wasn’t getting. Although, chronic illness humour, it did turn out that the problem was ‘all in my head’ since my pituitary gland is pretty defunct and it’s located in my brain… 😉 It’s still difficult for me to look back and say ‘I was treated badly’, even though I now know I *was* treated badly. It’s left a lot of (now, ironically, psychological) damage about seeking help in healthcare because I really was dying and no one would listen. I’ve always tried to see it from other people’s perspective and think maybe it’s because I didn’t look sick enough, or maybe I didn’t use the right words to describe it, or maybe someone was having a bad day and missed something, or they lacked experience or I said something wrong which threw them… But there’s empathy for other humans and human error and then there’s taking responsibility for something that wasn’t my fault. Watching Brain on Fire meant that I could see some of my experiences portrayed from an outside perspective. And, actually, there were many opportunities for people, whether it be colleagues, friends, family or doctors, to see that clearly she wasn’t right. Yeah, some of her behaviour might have been weird or ‘lazy’, but instead of showing some empathy and sitting down and saying ‘this isn’t you, what’s going on here’, she was told she was being selfish, that she needed to try harder, she was shouted at to see if she would ‘snap out of it’, people were impatient and she was ultimately worn down to a point where even the inherent natural instinct to fight to survive got turned off. But the scary thing is, that her and my experiences aren’t all that uncommon. When doctors can’t find answers, they turn to psychological problems. Lots of people with adrenal insufficiency are committed to psychiatric units first and then are only diagnosed when they’re in a coma. Part of it is that doctors don’t like things they can’t solve, and mental health has a nice broad spectrum, but part of it is that some are too arrogant to admit that they don’t know everything. I find this really baffling in this day and age since more and more people are surviving things they didn’t before which means there are going to be new and rare diseases being diagnosed which we didn’t have before. Therefore, just because it doesn’t fit into one doctor’s experience of illness, doesn’t mean the problem isn’t a physical problem rather than a psychological problem. So what I learnt from watching this film is that I’m not responsible for the way my doctors treated me. Even if I had said something wrong or acted weirdly, they were my doctors and I was the patient- they had a duty of care to me regardless of the root cause and they really let me down. Seeing someone else experience it first hand in visual form (rather than just reading similar experiences) gave me the chance to fully acknowledge that.

    Hello hospital, my old friend

    I’d actually been doing really well this year avoiding hospital. So much so, there’s a new ambulance triage section of the hospital that I hadn’t seen before and my hospital bag had managed to accumulate a thin layer of dust on it, meaning it hadn’t been used for a while. Look!

    Anyway, this week I ended up ringing 999 because I started vomiting. I haven’t thrown up since I got diagnosed in 2014 with adrenal insufficiency. In fact, I haven’t thrown up full stop for about 6 years. So this was new for me. Being sick with AI is a pretty bad sign: you lose fluids and electrolytes fast; it counts as a massive ‘stress’ on the body; you’ve either got a stomach bug which means you’re ill and so need extra steroids, or something else is making you throw up and have an adrenal crisis, which also means you need extra steroids, but most importantly, you can’t keep the steroids in your body *because* you’re throwing up. So being sick usually ends up doing the emergency injection and going to hospital.

    I’d had pretty bad low cortisol symptoms for about a week, but nothing I was doing was helping, despite extra steroids. And there was a bit of a list of triggers which I couldn’t necessarily eliminate:

    – heatwave. Hot weather causes me masses of problems

    – I started levothyroxine which is known to give you an upset stomach and lower your cortisol levels

    – I had my PIP tribunal looking and it was stressing me out

    – some other bits and pieces were making me stressed too

    – I still have stress fractures. Which had been healing but had also started hurting again, which I took to be a bad sign

    I started feeling really terrible on Monday evening and within an hour had been sick. It was actually a bit of a relief to start being sick because at least there’s a clear pathway of what I need to do! So I banged on the floor to get my husband from downstairs, rang 999 and kept being sick while talking to the dispatch. I was pretty proud of my multitasking at this point! My husband went to find my injection for me and started assembling it and I did it once I hung up the phone while he went downstairs to wait for the ambulance.

    You have to move quite quickly, especially as I didn’t actually know why I was being sick at this point. Did I have a stomach bug? Or was it quick onset adrenal crisis? And if so, why had it suddenly got a lot worse fast when I’d been having pretty consistent low cortisol for a week?

    The ambulance came and there was a trainee paramedic so he got taught a lot! The crew were brilliant in the sense that they looked at my info pack and involved me in all of the treatment, which doesn’t always happen. They gave me some more hydrocortisone, the same as my injection, but IV, which works much better. Then we went to hospital.

    The new ambulance triage was snazzy (and had air con- amazing!), but, despite a really good handover from the trainee paramedic, things went downhill from there. When you arrive in hospital with a suspected adrenal crisis (sickness and diarrhoea being the massive red flags), you’re supposed to get IV steroids (which I’d had), fluids, antisickness and assessed by a doctor with bloods done within about half an hour. Obviously it takes time for the bloods to come back, but if you have all the other stuff, it makes you safe until the results come back and we have a better idea of what’s going on. Basically, it’s as life threatening as a heart attack until you know otherwise.

    But it’s down to each individual hospital to have an AI protocol in place, unlike a heart attack where there’s a clear pathway everywhere. And either this hospital doesn’t have one or people don’t know how to follow it because it seems to be happening way too often!

    So I waited 2 hours for fluids and antisickness. No one did my obs during this time either, which is appalling. My husband was going a bit crazy by this point and going out to ask what was going on a lot. I eventually went out and said I was concerned I’d been triaged wrong (because it has happened before) and that I wasn’t in a&e for sickness and diarrhoea but those symptoms were the outcome of my potentially life threatening condition. I’d also continued to have episodes once we’d got to the hospital, which my IV steroids usually stops. So something wasn’t right.

    After some arguments, we got the fluids and antisickness and had the standard argument about my BP not going down in crisis but mine goes up instead. I kept telling the nurses that it’s all very well and good a doctor having reviewed my chart but my BP was sky high and they needed to know that I’m a rare version of this disease and I could still be critically ill.

    After 4 hours a junior doctor came to see me and said ‘so I understand you’ve come to a&e because you’ve got abdo pain and sickness and diarrhoea?’. And also they’d lost my bloods and urine sample so they hadn’t been processed. Then he tried to argue with me about my BP again. He got a (polite) earful and suddenly I got seen relatively quickly again.

    It turns out on top of all the other things going on, I also had an underlying UTI. It can be difficult for me to tell if I’ve got an infection because the nature of my illness makes me feel awful all the time, so unless I have a huge temperature or cough up green gunk, I don’t always notice. But a UTI is hard to spot anyway because my diabetes insipidus basically gives me the same symptoms of having a UTI anyway. Which I explained to the doctor, but he got this confused with type 1 diabetes (which I don’t have) so I gave up from that point. The other thing that annoyed me was he kept saying ‘but your electrolytes and levels are all fine’ when he did get the blood tests back, and he didn’t seem to get that they might be ‘fine’ now but I’d had 2 big doses of steroids and time to recover before they did the blood tests, so that should have corrected any imbalance. They should have been ‘fine’ by that point!

    Everything was just a big fight after another at the hospital and I find it frustrating. I gave them my info cards, the handover from the paramedics was good, I’m a polite patient and answer questions accurately. But I still was having to argue to get the basic care for my condition. And then when I was discharged, I had to argue for them to replace my injection kit because my husband had accidentally bent the spare needle so even though I had the medication, I wouldn’t have been able to give myself another injection if I needed it. I (politely) asked what they suggested I do if I started being sick or having diarrhoea again to which they replied ‘it can’t be that emergent, is it?’. To which I replied ‘yes. It can kill me quite quickly. I’m not keen on testing it though. So can I please have a needle?’. After a bit of eye rolling, I was given one. But why is it such a battle every time? I wasn’t shouting, swearing and throwing my urine sample at people like the drunk guy next door, but I got treated with the same level of scepticism.

    In a way, it’s good I had an infection, because I’d been really struggling to figure out what was making me feel so poorly the last week or so. An infection wasn’t even on my list of possibilities! And since starting the antibiotics and having increased my steroids, I’ve not had the sickness and diarrhoea, so clearly that was it. However, it disappoints me that despite going to a&e frequently the last few years, I’m still having to argue the really basic stuff like fluids and meds, when really there should be a plan in place. I wasn’t asking to jump the queue or to be seen before others, but my illness is highly time sensitive, and having presented with classic adrenal crisis symptoms, I should have had the correct protocol in a timely way.