I had no idea what was going on, except that I was in a lot of pain, struggling with things that were once second nature to me, and I wasn’t getting better.

it took over a year before I finally got a formal diagnosis (HSD - suspected hEDS - fibromyalgia & POTS - and I’m aware this is actually considered quick for these conditions which is a whole other discussion) and longer still for the other comorbid conditions that arose, and in that time my body had begun to deteriorate. I’d been told to rest, not to do anything if I’m in pain, and wait until I feel better - and when I said I wasn’t getting any better, I was given the same advice and sent on my way, or dismissed and given the ‘maybe it’s just anxiety’ talk.

eventually, a casual comment from one doctor about another condition - which he quickly dismissed as unlikely - got me curious, and by doing my own research and coming back to him with my findings, I was finally able to get the ball rolling.

had someone really listened to me, cared, and taken me seriously earlier - I may not have gotten as bad as I did, or at least not so soon. looking back, there were a plethora of signs and it’s alarming that medically trained professionals missed these. even today, I’m still waiting (and waiting, and waiting) for appointments and further testing, and most of my knowledge and management is self-taugh. really, I should be getting paid those doctor big bucks at this point.

anyway, hopefully someone out there in the early stages of chronic illness, recently diagnosed or still seeking answers for themselves is reading this and can learn from my mistakes - or maybe you can relate to my experience and can feel a little less alone. either way, read on to learn the -

1. pushing through pain & flare ups trying to maintain a ‘normal life’ and keep others happy - only to end up making myself worse

   this is one of the biggest mistakes to make when you’re chronically ill, yet one we all make repeatedly. after all, that’s what everyone else does, isn’t it? except our bodies don’t work that way - and pushing through is only causing more harm than good. pain and flare ups are your body literally screaming at you to slow down, stop, and assess. mild pain? depending on the condition - some gentle excercise is useful in my case (but this is not one-size-fits-all and often is a sign to stop doing the thing). but if it’s incessant, causing a flare up or a crash, if you find yourself declining over time? it’s time to take a step back and give your body a break. disappointing others in the short term is significantly better than causing yourself long-term damage.
   
   

2. not asking for help when I needed it because ‘other people can do this themselves’
   here’s the thing - asking for help doesn’t make you ‘weak’, and it doesn’t make you ‘a failure’. when you’re chronically ill, your body quite literally does not function the way it’s supposed to. it’s completely normal to be unable to do simple things that healthy people can do (or that you even used to be able to do). by not asking for help, you’re only making things harder on yourself and potentially causing more harm - and if anyone judges you, that’s entirely a reflection on them, not you. ask for help when you need it - you’ll thank me later.
   
   

3. trusting doctors who said ‘there’s nothing wrong, you’ll feel better soon’ rather than researching & advocating for myself from the beginning
   unfortunately, it doesn’t seem to matter where you are in the world - health care, knowledge, and compassion seem to be something that’s seriously lacking in the general medical space. if you’re not getting better, if you feel like something’s off - trust your gut, do your own research, and advocate for yourself. it might feel like you’re screaming into the void, but self-advocacy is one of the most important steps to getting help, as well as paving the way for change in the future.
   
   

4. not starting therapy, PT & physio earlier - it’s a lot harder to manage symptoms when you’re also rebuilding your baseline from scratch
   I mentioned earlier how it took over a year to get my HSD/fibro diagnosis’, and being neglected by doctors who told me ‘i’m fine, i’m too young to be sick, just rest’ etc, etc. well, resting while waiting ‘to feel better’ unfortunately cost me. I experienced muscle atrophy, further joint degeneration, and never fully healed anyway - connective tissue disorders can be tricky like that. while knowing my diagnosis is important and helpful, I wish i’d started working on my strength/movement/muscle recovery earlier. maybe they could’ve pointed me in the right direction - or even doing minimal movements while I gathered research myself and pushed for help - could have slowed or even halted my decline, and I could be doing a lot better than I am today.
   
   

5. taking too long to accept that this is my new reality, and I need to adjust my life accordingly
   it’s a hard pill to swallow (and that’s on top of the many actual prescribed pills), but it’s called chronic illness for a reason, and it’s not going away. that doesn’t mean it’s not possible to improve - every condition is different, and every person’s experience will differ. some people are completely bedridden, some manage to work full time and uphold a social life simulataneously. some conditions are progressive, some can improve (within reason) and some can stabilise. many of us will fluctuate at varying degrees between 3 years ago, today, and 3 years from now. but chronic illness is a part of this life now, and finally accepting that - accepting that I have limitations, that there are things I can no longer do, that I need to seek accommodations, support, or find ‘work-arounds’ for seemingly ‘normal’ aspects of life - has helped massively in my journey to managing my conditions better.
   

chontelle louise xx

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