I don’t ‘fit’ anywhere. I have Secondary Adrenal Insufficiency. I don’t have Addison’s Disease, so don’t fit into those or other autoimmune organisations. And I don’t have a Pituitary cause of Secondary Adrenal Insufficiency (that I know of), so I don’t come under those charities. There’s a fabulous American charity, which covers all types of Adrenal Insufficiency, but there’s not a UK one, and things are very different treatment wise. I sometimes get referred to Diabetes teams because bits of my other condition are ‘close’, but I don’t have Diabetes. Where’s my back up support in between doctors appointments?
If you have cancer, are pregnant, have a mental health problem, have something ‘common’ like asthma, have a heart condition, or most other illnesses, there tend to be charities or groups associated with them which carry on the support between medical appointments. It’s these organisations which help patients come to terms with their illness, and provide them with practical support, helplines and information when they have questions or concerns. Or even just a forum or a person to chat to. They teach you how to actually live with your illness, provide a space to find other people like you and help you explain things to your family and friends. They also can help you with fact finding things or administrative tasks. There’s a support group for almost everything.
Except there isn’t one for people like me. If I develop symptoms or my symptoms change, I don’t know if they’re ‘normal’ or a sign of something more sinister, but there’s no ‘go to’ organisation to ask. Everything I’ve learnt, I’ve mostly learnt myself or after talking to a nurse friend, through our painstaking research, or trial and error. I’ve read lots of medical articles to understand my condition because the resources from the two nearest charities to my condition only go so far, so I’ve had to do a lot of the work myself. Which is really hard work when you’re sick and you weren’t great at Science! It can be incredibly lonely, isolating and worrying.
Where’s the support group or charity for people like me, who don’t ‘fit’ anywhere? Who advocates for me? Who champions the research in ‘finding a cure’? Or organises fundraisers and events, bringing people together and giving patients a sense of unity in ‘living’ or ‘fighting against’ my illness? Who explains to my family and friends how it really feels and what they can do to help? Where’s the hashtag?
My support group is me, my husband and a couple of friends. None of them have the same condition, but they try really hard to understand it and help me work stuff out. I’ve also joined some fab Facebook groups, but I’ve not (yet) met anyone with the same presentation, treatment plan and diagnoses- and these groups are international ones, mostly based in America. We all say the same thing: that we felt like we were crazy before we found some people even vaguely the same as us. That we’re dealing with something which our doctors don’t necessarily understand or have heard of. That our fight often goes unrecognised because there aren’t coffee mornings, ice bucket challenges, mental health slogans or hashtags to draw attention to it or give us encouragement. That we wish someone or something was available as an organisation to ask questions to, to advocate for us and to help explain what’s actually pretty hard science to our friends and family. It felt (and still feels sometimes) a bit like waking up from an accident with an amputated leg and suddenly being blind and being told ‘sorry, we’re not going to help rehabilitate you, you need to work everything out for yourself.’ Maybe an extreme example, but would that happen? No. Why does it happen to patients like me? A lack of knowledge and awareness, rather than a lack of empathy.
My support group is small, but at least I have one. Some people don’t fit anywhere and don’t have anyone to work it out with. You (and your small group) become your own cheerleader, voice of reason, problem solver, expert, and advocate because you have to. I’m lucky (and grateful) to have a friend I can ask questions to, otherwise I really would be stuck. People like me might not have coffee mornings, charity runs or hashtags to show how hard and isolating their conditions can be to live with and to raise awareness. But we’re living with complex conditions nonetheless.