Full Story

So, let's get the ball rolling. I figured if I have set up this idea to fight the taboo of hidden disabilities, I kind of have to expose myself first. (Yes, I am slightly shit scared to do so, but here goes nothing!). It's time to stop making excuses of saying everything is seemingly fine all the time which we as humans (especially British people have a dab hand and excel) in doing this!.  

Well I'm screwed. On the outside I seem your average 20- something girl trying to figure out what the shitting hell she's doing in life whilst propped up against a pub nursing a large G&T. 

However, hate to break it to ya but inside I’m an effing mess. Aren't we all to some extent.

When I was 12, I was diagnosed with a spontaneous mutation of a rare bone condition. So rare that only 5 people in the UK have it and only 100 people in the world to be diagnosed. No wonder it took the docs 12 years to figure out what was going on and to be able to give it a name. God knows, I had every other medical condition known to man labelled to me at some point in those 12 years. But mega thanks to the docs and nurses at Great Ormond Street Hospital in London, I was finally given a proper, legit diagnosis. One with every letter of the alphabet under the sun written in the name. It goes by the name of Horan- Beighton Syndrome or in medical terminology and sounds way fancier, it is named Osteopathia Striata with Cranial Sclerosis. I’ve found over the years, when doctors ask you to pronounce the condition in medical jargon, it sounds waaay better in a butchered Italian accent. This also provides some light-hearted banter between the 163674 doc I’m seeing and myself and makes them realise I am a human and not just a rare specimen. This condition has 40 symptoms and if I do say so myself I’m racking them up overtime and at quite a speed at this moment in time. I’m way over the halfway mark now. Might reward myself with a gold sticker.

I once sat and had a think about what this condition does not affect and came to conclusion that it is only my fingernails, bum, boobs, hair, eyelashes and tummy that has not been disturbed by this condition. Quite good going!

I make light of the situation because I live in quite a lot of denial still getting to grips with it years on but with this condition comes with concerns for any children I may have in the future. I have a 50/50 chance of passing on this condition as it is a spontaneous mutation. Cheers to the lucky bastard of a brother I have who is literally the definition of health and has only ever been to the doctors once when he was 6 months old for antibiotics. With an added bonus that if I have a boy and they do have this condition, they seem to have it a lot worse with the symptoms and generally tend to not live past their 1^st birthday.  If it’s a girl who has this condition, they will be similar to me. So, when it comes to it, I’ll have to make some pretty hefty decisions about whether to be au natural and let nature do its thing with little intervention or whether to let docs intervene and with medical genius and science can in non-medical terms hatch some eggs and detect the ones which may not have the condition and if I can use those instead. Obviously, I want it to be natural after all these years of being a human specimen but as I get older I am realising that I would hate for my children to ever have to go through what my parents and I did when I was younger. So, I’ve slightly made my mind up, ever so slightly.

My motto always stands at why have one thing when you can have everything. This definitely helps for those days when I get shit news or having a generally shit day where I’m in a lot of pain or something strange starts to occur. Currently, it’s numbness in my legs, hands and lips. Oh goody! However, nothing phases me anymore. I’ve done X- Rays, Needles, Operations so many times, I could have probably got a degree in medicine from just testing out the mega expensive kit. Mum and I once counted that I’ve probs had over 50-60 operations, 5-10 which were life threatening. At my latest MRI scan, even the MRI nurse knew I was a pro at X-Rays as I just walked straight in, didn’t have to change into a gown as I just whizzed in with a none metal dress (funnily!) and zero jewellery or bra! Perfect, in and out quicker than you can say MRI!

Years ago, I would have not had this banter or even spoke normally with a nurse or doc, especially now that I do most of the hospital stuff on my own.

When I was younger, I use to shut down emotionally every time I went to the hospital for endless ops, appointments, being poked and prodded. I had a fear of hopsitals when I was younger. My body would go into all systems shut down at the fear. I didn’t leave the hospital for the first year of my life. 5 major ops before I was a year old and numerous other ops and case studies of me written in medical journals and published books, I have grown to realise that I will never let it define me, but it is a part of me and that what makes me who I am.  A very stubborn (some would say too stubborn!), sassy and loves a giggle young woman who does not let anyone walk over her. When it comes to health, it’s on my terms. Obvs, if it is life threatening, it’s out of my hands but for now, everything is sweet. A bit of humour can always help any tense situation I’ve found. Especially as hospitals are probably in the top 10 easily for being the most depressing, dingy and soulless places to have to spend time in. Even worse when it is involuntarily!

I have been in denial about my condition in the past! I’ve only told a handful of people other than family who I feel are my nearest and dearest and can trust them to not judge or see me any different. When I was younger, I never told people. I never want to be seen as a victim and never act like one. I would much rather people did not know and treated me the same. It was easier that way. Less hassle! However, I only felt I had to tell people was when I struggled to make birthdays, events or felt too knackered to even meet up for a coffee date. It sounds pathetic, but I would struggle due to tiredness or pain! I believe this is where I began to develop my sense of denial or inability to say how I was really feeling because people began to judge or thought I was just making excuses up to not see them or be there. Which was never the case. But because I do not display a physical disability or hinderance, people just assumed I was just wanting to get out of things. Christ, even one of my school teachers who knew me for the whole 7 years at secondary school did not realise I was deaf until a couple of weeks before I left after A-Levels. That was all due to me hiding it all under my hair. I do not want it to define me or to be seen as a victim. As I’ve grown older, I still do not let it define me, however I give less of a shit on being in denial!

When I was younger and to some extent still do now try to do everything. I don’t do things by halves. I do everything at 100 and fucking ten. I do it till I burn out. Which is when I unsurprisingly start to get ill and run down. Is it to prove something? That I am normal? Yeah well there is a word to describe this and its denial. I don’t want this to define me but I have to listen to my body. When it needs to slow down. Recuperate. Just to breathe (which has never been my strongest skill!). Slowly, I have grasped this concept, especially over the past 3 years being at uni, juggling a near full time job plus a social life and everything else in between. I have learnt it the hard way on some occasions where I’ve ran myself into the burning ground and ended up in a&e on a couple of nights but I’m still young and learning. That’s what your 20’s are about, aren’t they?!

But I have such an amazing support network made up of my close- knit family and best gal pals I could dream of and that is all that matters. 

Doctors and nurses told my parents numerous of times when I was younger that I would never be able to walk, talk, eat or do anything remotely independently. Well hate to break to ya my doc pals but I attended a mainstream school (primary and secondary), even when I did have tubes poking left, right and centre with a tracheotomy to help me breathe for the first 8 years, passed my GCSE's (maybe had 4 attempts to get my GCSE maths but everyone has one!), passed my A Levels, got in and attended a top 10 Russell group university and graduated this year with a 2:1, held a near full time job alongside uni and have a cracking set of friends and family. So yeah slightly exceeded expectations. Cheers to that! 

(Don't think the docs or nurses at the number of hospitals I've been in expected me to talk let alone graduate!)

So, what I am trying to say is I bet only a handful knew this and now it’s online, on insta and I’m giving exposure (whilst shitting myself!) and the balls for other people to speak out. Whether it is about themselves, a friend or family member. A problem said is a problem halved and all that.

I am very passionate about having your say, breaking the taboo barriers and taking a stand against people who have no fucking clue about what is really going on. I am already taken aback at the overwhelming support I have had since setting up a blog and insta account!

I am excited to start a platform for other like -minded people to come for a chat, a rant or a general giggle all whilst fighting the taboo and giving exposure to other strong people living with hidden disabilities.

Hope you enjoyed this little insight and has given you the comfort to share your story.

Love,

T

X

(p.s I would say a glass of gin has sponsored this content as dutch courage to post this!)