Before I got ill, I used to do a lot of volunteering. I’m not the type of person who volunteers for ‘look at me, aren’t I wonderful’ reasons, I like to volunteer because I like to think that if and when I need help, someone will volunteer their time for me, so why wouldn’t I do it for others? It’s a human thing to do. So when Addison’s UK were looking for volunteers to go to the Endocrine Clinical Update, I jumped at the chance.
You might be thinking ‘hang on, she’s said lots of times on this blog that she doesn’t have Addison’s.’ Correct, I don’t have Addison’s. However, when I first got diagnosed with Secondary Adrenal Insufficiency, I was directed to the Addison’s Disease Support Group to find answers to some of my questions. And I read every article on there and watched every video they had. Because everything in my life rapidly changed, I needed information on lots of things: red flags, sick day rules, info for my GP, info for my employer, prescribing guidelines for my pharmacist, idiot proof guidelines so me and my husband could do the emergency injection…. There was something for everything. And lots of their resources are free, which is amazing. The charity helped me when I needed it, so now it’s time for me to offer my help in return.
It definitely wasn’t just a ‘I guess I should do my bit’ thing though. I really wanted to be there, I feel quite passionate about awareness of AI, and I got a lot out of it too. For the first time, I got to meet someone with the same illness as me. Not just one person, 4 other people. Amazing! Here were 4 people who understood everything about what it feels like to have adrenal insufficiency. Don’t get me wrong, I have people in my life who are kind and supportive and who try really hard to understand and take the time to try to work it out with me. But this isn’t an illness which is easy to understand and it’s also one where you really haven’t got a clue what it feels like until it happens to you.
There’s growing awareness of the illness and protocols required, that’s part of what we were doing – we went to an endocrine clinical update for doctors and nurses and handed out information and answered questions about addison’s/adrenal insufficiency. However, it’s still quite an unfamiliar illness, even in the medical world. As a patient, this means that you have to get clued up quite quickly and can’t always rely on your doctor/GP to know more than you do. You have to learn to advocate for what you need. For me, speaking to different patients and nurses gave me the chance to learn more about my illness, things which I couldn’t necessarily find online: patient experiences of what works and what doesn’t and different ways of thinking to the ones I’d come across previously.
I went along for the afternoon session because I wouldn’t have managed the whole day (I was feeling really rough by the time I got home), but it was such a good experience and hopefully my very small contribution will help another patient somewhere down the line. I definitely want to be more involved with the charity in the future!