Rare diseases. They’re called ‘rare’ for a reason, and not usually talked about much, apart from on said awareness days or weeks where people care for the most minuscule of moments.
One thing that will always resonate with me was an experience I had in my last year of sixth form. I remember, one day we had a politics lesson at 7:30am as a result of unexpected circumstances meaning a whole class missing lessons we couldn’t afford to, and… I couldn’t make it. I couldn’t move- it was a day my chronic illness had gotten the better of me. I’d say this was a time before everything went to pot, and I still was in a fair amount of lessons (though I was still missing enough to be a concern), so from courtesy I went to find my teacher when I returned to school. I began to explain my situation to her and mid-way through, she said to me “Don’t worry, we all have days we can’t get up… wait, what?!”. That moment was a turning point. I was always scared to mention being chronically ill because in my head ‘I didn’t have it as bad as everyone else and that made me less valid’ (not true), and I was invisibly disabled so people didn’t get it (though at the time I couldn’t walk aid free), but there was a level of trust. I briefly once more mentioned it, and was happy to move on, but for the first time, it felt like someone cared. We sat down in room 16 as I explained my diagnosed conditions and all under investigation, the impacts it has on me and my life, and we spoke meds. She knew I had a lot going on- appointments always being a fair indicator- but not what. Not how much. She looked at me then and there and never once did I have to go through ‘but you don’t look sick’. We spoke of the spoon theory and why I use what mobility aids and when, my fears about aids and the judgement I’ve faced because of them.
I trusted her, but I never expected her to understand. I never expected anyone to understand- even my family struggled. She did more than understand. She googled the conditions, what it meant and could mean, she looked up what she could do to help me and what medications could impact my life in what way. She chose to do much more than care, and how I feel about it is not something I could ever put into words. I was, and still am, so grateful.
That is something you don’t get in daily life. It’s not even something I expect, but I don’t appreciate anything more than that one instance… but I do expect mentions of it in the media (TV or a novel, for example) to be researched, to be accurate.
On a regular basis, chronically ill folk have to explain themself, they have to explain their conditions, to professionals with little awareness. I remember the shock I felt when a nurse treating me at the Royal Alexandra Hospital in Paisley recognised and knew of my condition straight away!
A few weeks ago, I saw my spoonie friends tweeting about BBC Casualty. If you know me, you’ll know I used to be obsssed it’s Holby City and all things surrounding that fictional hospital and it’s cast, but the more ill I got, the more I found myself leaving hospital to have to catch up with a programme… set in a hospital. And I just wanted to get away. For a very long time, I clung to the doctors and nurses on the show, maybe for a medical figure to look up to but catching up felt impossible and I found myself feeling down due to chronic illness.
Fast forward a little, and as I said, my spoonie friends mentioned the show on twitte. Now, aside from the friends I’ve met through the show who are spoonies, I don’t know many chronically ill people who do still watch the show, for whatever reason that may be. This uproar made me search the tag… which I hadn’t for a while, because despite not obsessively watching any longer, I still found myself saying ‘no spoilers!’
I searched said tag on twitter and found people discussing Ehlers-Danlos Syndrome and Fibromyalgia. Never, aside from on Five Foot Two, Gaga’s documentary which discusses her chronic illness, have I seen it represented in the media like this,. I just so happened to have noticed thi en route to my grandparents house- a couple who still watch the shows religiously- and found myself saying ‘can we watch casualty before I go to bed?’. My grandma and I were dashing off to Budapest the next day, but I felt it very important to see. I found myself urging us to watch it because maubky, as much as I love them, that side of my family don’t understand. They urge me not to use mobility aids when I physically can’t walk, from shame or denial, and think my dislocations daily (and those severe) are over dramatic and purposeful- though I have no idea how!
I watched this and the girl in the show and I were so similar in so many way as, yet had indivdualities. I said to my grandma, ‘that sounds like me, I bet she has EDS’ and my family persisted with the girl looking fine and surely being in not as much pain as she was.
It was only when they detailed EDS, they went through the medical definition of the condition and what it entailed, that my family seemed to understand. They released that when I said I was always in pain, or couldn’t move or walk from it- I meant it. They realised that it was that easy to dislocate my joints. Suddenly, they understood. Fibromyalgia was also briefly mentioned, and further it madden sense why I was always in pain, why my doctors advise mobility aids, why some days I find myself paralysed. CAasualty also mentioned Postural Orthostatic Tachycardia Syndrome,and they got why I randomly could pass out simply standing up and had to be careful.
It’s a shame a Doctor has explained it to them (or other members of family they’ve heard second hand) and they never tried to get it, but casualty was w\hat got it through to them.
My highlight of the episode was surely a quote that summed up chronic pain:
Niamh, the patient with EDS, earlier mentions that something ‘didn’t hurt’. The medics were apprehensive about this. Later, he patient was clicking her hands from anxiety and was asked. ‘Doesn’t’ that hurt either?’
Her response, with the earlier normalisation of pain, was ‘everything hurts, every day!
I relate to this on such a deep level. Everything hurts, every day, but also… it’s normal. I am in immense pain every single day, but it is so normal for me. Today I have dislocated my ankle twice and though this particular repetitive injury is somewhat debilitating in the fact I can’t walk unaided anymore at all, I am so used to it. I had to pop it back in, sit down for a few minutes to stop myself from feeling immense nausea, and then get on with my day. I dislocate my knee regularly, too. All that can be done (unless it i more severe, which in this case has only happened twice, three times with my ankle and twice with my hip- which totally puts me out of mobility) is putting it back and going on, knowing I’ll probably dislocate something again later.
I am so tired of this pain, but also so used to it. I’ve said, recently- since pain is a constant- actually, the worst part about dislocations is the noise. That horrible, cracking sound and the nausea that accompanies both pain and the mental knowledge my body part is not here it should be.
So, today I say thank you. Thank you BBC. Thank you Casualty. Thank you to the wonderful actor (who I found out was genuinely disabled, so thank god for legitimate representation!) who played Niamh, for this representation. For this understanding. For this research that properly shows this condition, and has made my family of many, finally understand.
Currently the episode is still on iPlayer for 16 days. Here is a link if you’d like to watch it: https://www.bbc.co.uk/iplayer/episode/b09xt8n7/casualty-series-32-episode-29#
I hope the media will continue to recognise rare iseases, to talk about them and properly research them, from here on. Though EDS is probably one of the mist common rare diseases, as a sufferer I am great full and it is a step forward regardless.