In a strange way, I was lucky not to get diagnosed until ‘later’ in life (by which, I mean the grand old age of 35 ). It meant I had, without realising, become so accustomed to the myriad things wrong with me that a lot of the time I really didn’t notice them.

I’d always been clumsy as a child; there were a few years where my party trick (if you can call it that) was to fall down (and up) stairs. Often so badly I winded myself, and once so badly I dented one of the walls in our house.

I tripped, sprained, bumped and bruised, all of which could easily be written off as ‘clumsy’.

In my mid-20s, I ended up with a rule-out diagnosis of IBS. I’d been having problems for some years and they reached a crisis point during a particularly stressful situation around that time. At first, I tried an exclusion diet to rule out intolerances, had blood tests for Chron’s and Coeliac, and eventually when ‘nothing’ was found to be wrong I was given the handy catch-all diagnostic term that is IBS.

From my mid-20s onwards, my sleep quality also significantly started deteriorating.

In my early-20s, I had the ability to sleep like the dead. Nothing would wake me — in fact at one party, I woke to find a friend’s hand over my face, they were checking I was still breathing I had been sleeping so deeply!

But that changed, and I started to increasingly wake through the night and have light and restless sleep when I was out. I also started to have real problems grinding my teeth — something that comes under the diagnostic umbrella of TMJD, though I didn’t know that at the time either.

I wasn’t I was grinding my teeth because I was stressed — I never found myself doing it while I was awake, it was something that only ever happened while I was asleep.

I chewed my way, year after year, through biteguards, shattering a tooth even, telling dentists in increasing frustration how it was affecting my life — assuming that my ever decreasing sleep quality was solely attributable to this. I often had a funny (lack of) response to dental anaesthetics as well, but never knowing that could be anything other than “nerves in the wrong place” thought nothing more of it for a long time.

I was still fairly clumsy, but again, had been so used to being that way for so long that I easily accepted it as part of ‘who I was’.

Another thing I’d never had reason to question until my approaching mid-30s was my skin. I have always had huge and widespread stretch marks, in spite of having never gained or lost a dramatic amount of weight, nor having children. But again, I’d just blindly accepted that as the way my body was.

Join cracking and crunching, that weird thing my thumb did… how can you know what isn’t normal until you start to have something else to compare to? I never had the opportunity to really see the ways my body twisted and warped itself compared to other people’s until I started doing yoga in my early 30s.

“Oh, you mean not everyone can sit in knee-pile pose? Or that it isn’t easily comfortable for those who even can sit like that?” or “what do you mean, it’s strange for an ankle to bend so far in that direction?”.

Bursitis, horrendous torn ligaments in the side of one foot from where it buckled underneath me when I stepped off that pavement in Marrakech, more falls downstairs — in isolation, still, these things didn’t set off alarm bells.

And of course, the human body has a remarkable (alarming?) capacity to adapt to chronic pain.

It wasn’t until, at the age of 35 when trying one of my friend’s super-strong painkillers one weekend (ok, to get high, but that’s not the point!) that I slept like a baby for the first time in a decade, and suddenly started to question things.

Oh, you mean the way my shoulder cracks out if I lay on it funny, that’s not normal? That might actually be painful, and I’m just not feeling it any more?

A year and a bit before that point, I’d had a diagnosis of marfanoid habitus, and after that night of blissful, painkiller-induced sleep, pennies finally started dropping and I went to my GP to ask questions and eventually see a Rheumatology consultant who gave me my diagnosis of Ehlers-Danlos Syndrome (Hypermobility Type).

Compared to a lot of people with EDS, I am actually lucky. I’m mobile more often than not (though do now carry a folding stick in my bag most places I go, just in case). I don’t need a wheelchair (yet). My PoTS (postural hypotension — aka “stand up=nearly pass out”) isn’t so bad that I’ve ever actually blacked out.

My Rauynaud’s, though deeply uncomfortable at times (I’ve never been as cold as I have this winter, often wearing 4/5 layers on top, two pairs of socks and still feeling cold) doesn’t ever turn my hands as white or purple as I’ve seen it transform some hands.

My gastro-intestinal problems are pretty bad at the moment; I’m not able to eat big meals, things aren’t passing through properly, I’m suffering horrible cramps and distension and the meds to keep the conveyor belt moving only bring with them additional cramps and dizziness and nausea. But I’m still able to eat, even if I do have to plan days now around when I take my laxative and where I’m likely to be later in the day when it will kick in.

And yet, I’m still lucky. I lived with this for so long without being diagnosed I’ve gotten really good (or perhaps actually it should be really bad?) at pushing hard to get things done when circumstances really require it — like the weekend I moved house and towards the end of the day when we realised time was getting tight and we couldn’t afford to pay our movers for extra I just started heaving boxes into the house to Get It Done.

I live in a country with free healthcare. Sure, it’s being privatised and dismantled at a frankly terrifying rate, but it’s still there. Yeah, it means I’ve had to wait since October 2015 for an endoscopy (and still am), and for pain management and physio help (and still am), but they will come, and they will be free.

But has all this being used to the problems come at a price? Does it mean I’m harsher on myself than I should be? I’m definitely terrible at realising, let alone admitting, that I need help. I am perhaps also far happier to let NHS waiting times sweep over me, having never had any help until now I’ve never had any expectation of it being quicker or easier to access than it currently is.

I’m glad to understand myself better, and it’s definitely better late than never, but I can’t help myself from wondering sometimes what price it may have come at. In spite of all I’ve written, I still can’t be kind enough to myself to see all the problems as serious, as being ‘disabled enough’ to deserve accessibility help, let alone be as kind to myself as I need.