I let a Doctor knock my confidence in how I manage my Adrenal Insufficiency recently. I’ve since realised that actually, I do a pretty good job considering it’s complicated. My GP looks panicked whenever I appear at her surgery, so it’s ok that I feel unsure sometimes- she has medical training and I don’t. I can measure my BP, my HR, Blood Glucose and temperature and make some kind of assessment myself, but I mostly manage myself based on gut feelings and check with HCPs if I’m not sure. I have 5 ‘feelings’:
- I can ‘ignore’ this. Which means: I’ve got lots of things going on symptom wise, but I’m going to try and get on with it. A ‘normal’ day.
- I need to do something or this will end badly. Eg take some tablets, lie down, sleep, eat.
- I need to seek medical advice.
- I need to go to A&E.
- I need to call an ambulance.
Most days revolve around feelings 1 and 2. There aren’t many people I can reliably ask for medical advice from (number 3). A lot of the time when I hit number 3, I know what I need, but I either want to run my plan past someone who can back up my ‘feelings’ with science, or I need them to prescribe me something.
The last time I went to A&E, I went because I had my number 4 feeling. I couldn’t say why, my BP, HR, temperature etc were all ‘fine’ when I did them at home. But I had my number 4 feeling, so I went to hospital. I didn’t have a specific symptom just a general overall ‘not well, this will end badly’ feeling. I was admitted for 4 days- my feeling was right.
I haven’t had my number 5 one for a while (thankfully). Most paramedics are great- I’ve had the same one come out to me a couple of times. The last time he said ‘her feelings are usually right, we’re taking her in’ when his co-woker wasn’t sure. My feeling was right- I was admitted for 2 days.
I know how ridiculous I sound saying to a medical professional ‘I have a feeling I need to be here’. If you are a medical professional reading this, I wouldn’t be surprised if you’re thinking ‘who is this idiot?’. It depends on who I get as to whether they ‘believe’ me. It’s stressful being ill let alone when you think you might have to convince someone that you need help.
I had to fight for a long time with various HCPs. I was made to think that I was going mad and the problem was psychological. I was told I was wrong so many times. But I had my gut feeling that I was right, and it had always been right in the past, so I kept arguing, with support from friends. I found one senior consultant who ‘believed’ me and it made such a difference because people couldn’t tell him he was wrong and that it was psychological. My feeling was right.
I’m not a scientist, I was hopeless at Biology. And I know that tests are useful indicators, providing you’re looking in the right place. But the best doctors/paramedics/nurses I’ve had since diagnosis of Adrenal Insufficiency have been the ones who have said ‘everything seems fine, but you have your feeling. Tell me about it.’ They’ve listened to me and treated me as a person with an illness, rather than looking solely at the numbers on the page/machine and treating me like a condition attached to a person. If they then still say everything’s fine, I mentally take note of the situation, reevaluate the ‘feeling’ and use it as a benchmark for next time.
What would have happened if I’d have ignored my gut feelings and given up? I probably would have died. So if as someone treating me, you instantly dismiss me when I say ‘I have a feeling’, I will struggle to trust you. Many of my doctors and nurses have been proved wrong in the last few years, but my gut feeling has been pretty damn accurate.