I don’t have the typical 18 year old lifestyle. I’ve not experienced the ‘average’ teenage years: and I won’t know what it feels like to live a standard life, probably ever.
I’ve got Ehlers Danlos Syndrome (EDS). Not to delve into the ins and outs, but it is a genetic chronic illness which impacts my day to day life. Symptoms are wide and varied: including (but not limited to) relentless chronic pain, regular joint dislocations, and the development of other conditions which result in another glorious catalogue of symptoms being unleashed.
I started showing symptoms of EDS at the age of 10, and was eventually diagnosed at 14. Since the age of 10, I’ve had to adapt nearly every aspect of my life in order to deal with my experience.
Nonetheless, to the naked eye, you wouldn’t know I was handling a chronic illness. Invisible illnesses, unite!
EDS hasn’t stopped me from doing what I want to do, the vast majority of the time. One of the main things I love to do is go to gigs and festivals, a passion which seems to run through my blood – my parents took me to my first gig at the age of 7, and I’ve never really looked back since. A gig or festival for me though, is a military operation.
There has to be a hell of a lot of pre-planning. I tend not to do a great deal in the day or two before, to ensure that my energy stores are the highest they can be; I have to ensure my meds have been taken bang on schedule (which is harder than it sounds), so that pain levels can be as close to ‘normal’ as possible.
The pain never goes away, but it’s widely known amongst those who suffer with chronic pain that you have a tolerable pain level, in which it essentially dulls into the background. That said, you can never pre plan for a spontaneous shoulder dislocation – you just have to be mindful that something like that is a possibility.
The same applies now I’m at uni, to a night out (of course adhering to whatever Covid restrictions are in place at the time – responsibility, people!). I need to ensure that I’m prepared prior to a night out, and after a night out, I need days to recover where I essentially turn into a potato and do a grand total of nothing.
Freshers’ week absolutely ruined me, and quite frankly I was over the moon once it was over. Whilst I had a great time with the most brilliant set of flatmates, it sent my body into an absolute frenzy.
The other slightly daunting thing about a night out, a gig, or any form of social event for that matter, is having to inform my peers of the ‘what-ifs’. My immediate circle knows now: yes, there’s the chance I could faint, dislocate, or need to cut the night short because my body just hit a brick wall. And they’re all ridiculously supportive and understanding, which I’m thankful for.
But anytime I have to explain this to a new person, or a new set of people, the fear never gets any less. I’m an 18 year old girl who’s having to brief another set of 18 year olds that I could just randomly lose consciousness, but if I do, not to panic – it’s quite an experience. And quite a worry too, because for the rest of the night, I’m preoccupied trying my absolute hardest to not let my EDS affect my night, or those around me, so to not be labelled an attention seeker, or just a straight up bore.
This is far from a big sob story though. Funny that I have to even disclose that when I explain myself – no matter what, I always drop it in – which is something I need to work on personally, because talking about circumstances within my life should never be categorised as moaning on or attention seeking.
My social life hasn’t ever been normal, and it never will be – I accepted this years ago and, as cliche as it sounds, EDS is simply a part of me now. The purpose of me writing this is to portray only some of the things in my life, knowing that there is no cure, whilst concealing it in the best possible way.
An invisible illness can be a silent and slow form of torture. Not only do you get the physical impacts from it, but you get the mental too.
It’s reached a point where if I don’t plan every aspect of my day – so I know what I’m doing and when I can have my rest periods – I will go into full-on meltdown mode. And we’re talking hysterical meltdown mode. These things aren’t seen by an able-bodied person, and probably aren’t even considered.
Many of my close friends and family never see me on my worst days, where I just allow myself to feel sorry for myself and wallow in my poorliness.
These bad days have increased in their number too, since the pandemic – many who’ve had covid, myself included, are suffering the impacts of long covid months later thanks to being immunocompromised. Just adding the cherry on top to the already relentless chronic illness. Part of the lack of visibility of my bad days are through choice – part, however, is due to stigma amongst society.
“But you don’t look sick” – how many times have I heard that? I dread to think. We ultimately need to remember that no matter who you come across, they’ll be fighting some sort of personal battle.
You might look at a uni student, and think they have it so easy at the moment: they’re going out and living their best lives mid-pandemic. Trust me when I tell you that what you see on the surface is not necessarily the truth.
I’m an 18 year old, visibly healthy girl: but beneath the front lays an entire different truth. Invisible illnesses exist and are valid – their impacts stretch further than you can ever imagine.
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