I was diagnosed with Chronic Fatigue Syndrome at 13 which after a rather horrible year seemed to improve itself. Whilst my energy levels never returned to normal I was able to get by and live a relatively normal life. Then I got to 21 and had another severe episode where I was unable to even feed myself and had to leave university for year to recover. About a year ago, it started to get quite bad again, though it was then rediagnosed as fibromyalgia. However, after being told there was nothing that could be done for me I decided to try accupuncture by a Chinese doctor. Now, those close to me will know that I am not the ‘hippy’ type and was probably as far from a believer an alternative medicine as you can get, but I had run out of options and desperate times… The Chinese doctor examined me and asked was I sure that I didn’t have a thyroid problem. I insisted I didn’t – I’d had my blood tested for it. With every appointment, she kept insisting this was the issue and so eventually I googled thyroid issues and it was like a tick box of my symptoms. A bit more googling and I’d found a local specialist who I booked in to see. He ran more tests and low and behold – a thyroid issue was discovered! A couple of months of medication later and I was feeling a lot better and now am back to my old self. However, this was a lonely experience and trust me – doctors give you very odd looks when you tell them you’ve been diagnosed with something (fibromyalgia), but don’t believe it exists so you are exploring other options. Part of wanting to set up enablie was to create a sympom specific community so that others who are searching for a diagnosis (or don’t believe what they have been told) can share symptoms, tests, etc and take better control of their own help destiny.
I also have a disabled son who as well as brain damage is completely blind in one eye with a large macular scar in the other. He has micropthalmia (small eye) and so wears a prosthetic eye to help even out his face. He is the most amazing person imaginable and every day continues to astound all the medical professionals by hitting all the milestones we weren’t sure he would. He will likely need to learn Braille (or so we are currently told) which will bring it’s own set of challenges. As you can imagine, we have a lot of hospital appointments! Luckily my husband and other son are both relatively healthy (touch wood!) so things are just about manageable!
All of this helped me realise that disability/illness are complex – I don’t want to have a different go to place for every condition which seems to be the current option. I also don’t want to be siloed when it seems like there is so much overlap with other conditions (e.g. Fibromyalgia and secondary hypothyroidism) – hopefully the widest pool of similar people should lead to the best advice and support.
There is also the very annoying admin side I wanted to fix – there must be a better way to manage future appointments that have 10+ letters stuck to my fridge. Not to mention trying to remember who you saw, on which date and with what agreed follow up when you are chasing the promised letter that still hasn’t shown up 6 months later…
I want to be able to get a quick second opinion when I am not sure I was told the best thing by the GP/consultant – especially when I know that it’s because I forgot to mention half the things I had intended to during the appointment.
I want to share funny stories with people who can relate (like my son popping his eye out at nursery and not telling anyone, resulting in an impromptu game of ‘hunt the eye’ when they noticed sometime later that it wasn’t in anymore.
I want to be able to ask questions to people who have the answers to very specific things – like where do you buy your eye plungers from and what are they actually called so I get the right results on Google? Are some brands better than others?
I want to quickly assess external environments, be they restaurants, activities, classes or tourist attractions in a slightly more nuanced way than just are they wheelchair accessible. I want people I can connect with to share some of the bits of myself I keep hidden from my friends because it’s important to my survival to maintain a bit of normality. I want to find out about relevant trials and people’s experiences so that I can take a more active role in managing my health plan.
My conditions don’t define me. My son’s don’t define him. But they are a part of us and that is the part I have created Enablie for. I hope it helps you too.
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