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.

2 thoughts on “Having to fight to stay alive when it feels like your doctors don’t care

  1. Holly says:

    I’ve had but a tiny shadow of what you describe, but girl do I relate! I love the analogy of pitchfork vs lava pool – for its vividness, while its accuracy makes me angry and sad. I, too, wonder if jumping in the lava would be easier – well, I know it would be.

    I don’t know what keeps me going other than innate stubbornness / determination, maybe, and undoubtedly my husband – but, like you, I feel I’m a burden, not because of anything he says or does, not because I feel I would view him that way if our positions were reversed, but just because that’s the way I’m built.

    Indifferent medical personnel, let alone those who are actively judgemental or hostile, erode my determination – though sometimes they reinforce it, not necessarily in a healthy way, to something like “I’ll show them!” The anger and resentment build, and can poison my relations with new practitioners. It’s a mess, for sure! And a sad commentary on our medical systems, which CAN deal with these matters appropriately, but too often choose not do.

    Hang in there! I sure hope you don’t end up having to go to the ER yet again because you’re too low on steroids to avert yet another crisis!

    Hugs,

    Holly

    Like

    • Ok Then, What's Next? says:

      I think you hit the nail on the head when you say that they can deal with issues but often choose not to… that’s the impression I’ve been getting from some of my interactions.

      And I agree, I don’t know what it is which keeps us going, but it’s a good bloody job we’re so stubborn!

      Like

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