The problem with the way I got diagnosed with Adrenal Insufficiency is I never had a chance to process what was going on and deal with a really life-changing, scary diagnosis in an appropriate way. I’d spent a lot of time being told by some Doctors that my problems were ‘all in my head’ and to ‘just get on with it’ which meant that when I got told what I did actually have, I felt relief rather than fear: there was actually something wrong, I’d been right to keep arguing and now people would have to take me seriously. Plus I didn’t really know an awful lot about it so had to spend time learning. But if I actually sit down and think about it, it’s a really scary illness.I don’t tend to talk about the scary bits because people don’t tend to react well. I’m really practical about it most of the time, but sometimes I think it’s ok to be scared- it’s healthy.
- It’s not well known. This is the scariest bit for me. Most people who need help go to the hospital and know their doctors will take care of them. I’ve had some pretty awful experiences in the past where I’ve been crying and pleading with people to get them to treat me and they haven’t until someone else has intervened, and those experiences make me wary. Equally, lots of staff have been great and want to learn. I can’t tell you how relieved I feel when I spot a nurse or a doctor I’ve had before and know that they’ll look after me because they know my condition and I don’t have to be ‘on top of it’ anymore.
- A lot relies on the fact that I’m conscious. I have alerts/red flags set up and if someone picks up my phone if I’m in an accident, the lock screen tells them what to do. But it does worry me if I were to be unconscious.
- I haven’t had a lot of warning recently, I’ve been fine and then I’ve been in hospital in the space of a few hours, twice in resus and twice when by myself. But I felt fine immediately before. I’ve managed to get myself sorted and clearly didn’t die, but it’s a stressful thing being by yourself calling 999 and making medication choices/decisions, trying to remember what you’ve done so you can tell people helping you, all while trying not to pass out or be sick. Then add in the fact you’ve got the worry from numbers 1 and 2. I’m used to it, yes, but it’s still a scary thing.
- I can’t get stressed about it. An appropriate response for having to call the emergency services would be your fight or flight system triggering, keeping you safe until they arrive. That’s the whole reason I’m ringing for help, because that system doesn’t exist. So I have to try to shut off any feelings I have about the situation because if I don’t I get sicker quicker.
- There’s absolutely no way of checking what’s going on with my cortisol level. Diabetics can check their blood so they can adjust their medication, I literally have to guess. If I get it wrong and under-medicate, that could have serious consequences. But I also worry about being over cautious and over medicating or going to hospital when I don’t need to. If I went to hospital every time I had symptoms, I’d be there every day- clearly not an option. So I manage it based on symptoms and sometimes I get it wrong.
- Symptoms can be misleading. I have about 4 different types of dizzy, all meaning different things, 3 stomach aches, 2 reasons why I might shake… I’ve worked most of them out now, but it took time to work out the really bad ones from the normal ones.
- I spend a lot of time blocking out symptoms, because if I didn’t my life would be really miserable. Which is fine, except for sometimes if I’m really tired I miss some obvious signs of when I should be stress dosing, which can make things change pretty quickly. Or I’m so foggy or out of it I forget what I’m supposed to be doing.
- Small things can kill me. A argument could quite easily knock me sideways. My friend got a stomach bug (massive problem for people with AI) the other week after we’d seen him and my husband asked me to get my injection out so he could practise in case I got it. I’ve got the dentist next week and the last time I went I wasn’t very well afterwards. I don’t get stressed about the dentist, but my body doesn’t like it for some reason. It doesn’t take a lot.
- There are some situations I know I wouldn’t survive where others would. A car accident with serious injury, major surgery, serious illness would probably kill me. There’s no point in worrying about it, but it’s a bit depressing to think about.
- I can’t let myself be scared about the things that scare me because it makes me ill. One way of overcoming anxiety is to face it, accept it and realise it wasn’t ‘that bad’. But if I do that, I would be very poorly, which is what I’m scared of happening, so it would be very bad!
I’m pretty practical about it, but I’d be lying if I said I wasn’t scared sometimes. I have a few friends who know exactly what to do if I’m ill, and I feel like I can let down my guard when I’m with them, but I feel like I have to be ‘on top of it’ the rest of the time, which can be exhausting. My cortisol level can change for completely random reasons- even from thinking too much. It’s a massive guessing game that changes all the time. Some people with AI can lead a relatively normal life with few symptoms, but, I don’t seem to be one of those people at the moment unfortunately. I get on with it most of the time and don’t generally worry about it, there’s not a lot of point, but sometimes I think it’s ok to be scared.