As I was working on a future project I was trying to put into words why disability representation was so important. I realised that my life, my story, my disability story, illustrated the point. You may have heard me mention that I didn’t recognise myself as disabled until my early twenties. The fact is that I was born disabled. How did I go twenty years knowing I was disabled? Well that, dear readers is what I’m about to share with you.
The short answer is bad medical professionals and a lack of disability representation and education in society.
The long answer has been split into multiple parts. In Part One I shared with you my early childhood up to 11 years old. Now follow me as I head into my teenage years where things begin to get a bit more serious.
I talk about a stay in hospital, bullying, Body dysmorphic disorder (BDD) and anxiety and depression in this post.
Anxiety, anti-sickness tablets and appendicitis?!
Hindsight is a wonderful thing. I can look back clearly now and pinpoint the exact time in my life that I began to suffer from depression and anxiety. When I was 14 my school decided it was time to shake up our classes. For two years we had been with the same students, and now with the year 9 SATs looming they had decided to reshuffle the classes so students would be placed in classes that matched their level. Not to be confused with the American SATs, these exams were not as crucial and basically helped to show which level a student was at ready for the much more important GCSEs we would be studying in years 10 and 11. GCSEs are more like American SATs, albeit we study for them at 15 and sit them at 16.
Fantastic, I thought! I would finally be moved up to the higher band which my parents had been championing for me to be moved to for two years now. I had been the top student in my class since I joined the school. My school had tests every half term, and apart from Maths, I regularly scored a 98-100% average. If anyone needed to be moved, it was me.
But no one did get moved up to the two classes in the top set. Instead, people got moved down, and up to my class which was the top class in the middle set. I would eventually get moved up to the top set for GCSEs but that was too late. The damage was done in that year. The year of hell.
I wish I was being dramatic. At this point in my life, I was no stranger to being bullied. I had been bullied since I was 5 years old when the first bullies in my life started pushing pencils through the round holes in the back of my chair. They would continue their various torments through primary school, other bullies would take note of their behaviour and add their own taunts. It got reported to the school when I was 10 because one of the same pencil pushing bullies was seated alone with me in that classroom, far away from the teacher’s desk and everyone else. He only had one thing to do; torment me. I ended up sitting at the table on my own for the rest of the year which suited me just fine.
New school, new bullies and yet none of it compared to what one boy put me through that year. He targeted me, there are no other words to describe it. Thinking back to it now and how he made me feel it reminds me very much of a predator. Every day when he came into our tutor room his eyes would seek me out and I would hold my breath waiting to see if he was going to come at me there or wait to do it later. I don’t know what I did to catch his eye originally, but I do know why I ended up stuck on his radar; I refused to back down.
Years of being tormented, of being pushed around had been building up inside me and this boy kept pushing and pushing. Eventually, he found the right buttons and I lost my temper. I told him I hated him, and he just loved that. He lapped it up like a cat had got the cream. He rubbed it in my face every chance he got. Egged on by our classmates, not just other boys but girls too. There was one girl in particular who hung around him constantly and I think it bothered her that he gave me so much attention. I wanted to tell her that she could take it.
The teachers were completely oblivious. My parents didn’t know exactly what was happening, but they knew something was happening. I didn’t realise just how badly it affected me until I was talking to my dad last year and he told me that I stopped eating when I was younger. I suspect it was at this point. I know that I was being sick every day before going to school, and my dad had to force me to go to school. That sounds shocking, however, you need to understand that the late 90s was a very different time. Looking back we can now say it was anxiety and a doctor should have treated me for it. Back then teenagers didn’t get anxiety or depression. Instead, my family GP just gave me anti-sickness medication to stop me from being sick. I was on them for several years, which is far longer than you’re supposed to be on them. I’m not sure if she suspected what was the real cause and her hands were tied by medical bureaucracy, and that was all she could do for me, or whether she missed it entirely.
It wasn’t the best way to combat anxiety and it was extremely hard at the time, but, having gotten through that at the worst time in my life I can now control that element of my anxiety. If I feel nauseous going to an appointment, an interview or doing something new I can usually overcome it. I really don’t recommend trying that method to overcome your anxiety, but I have to admit I did get something beneficial from it in the end.
The bully didn’t stop after that year. Despite being in completely different classes for the next two years he still tried to make my life a misery. Fortunately not being in the same class as him meant that he didn’t have the access to do it. Instead, he would grab me when I was walking to and from class. One such occasion was Valentines Day and someone (quite possibly a hanger-on girl) had given him a Valentine’s Card. I refused it when he tried to hand me it. I knew it wasn’t serious and I could see the sniggering group in the background. As he pulled it away from me I saw the “Dear [his name]” on the ripped open envelope. I had actually frozen in fear at the sight of the card and my instincts saved me that day.
Other people bullied me over the next two years, including a female student who got a male student to put a plastic bottle down his trousers and then rub up against me suggestively where I was sitting. In the middle of a classroom when the teacher went out of the room to deal with a problem elsewhere. Not a single other student said anything because they didn’t want it to happen to them. I didn’t realise until years later when discussions about sexual harassment started happening just how very wrong that entire situation was.
I’m going to hop back a few years now to when I was 13. Like most teenage girls in the 1990s, I was obsessed with pop music. For me it wasn’t Take That or The Backstreet Boys though, it was Boyzone. I had already been to at least one concert by this point with my dad and younger cousin who was also a fan. For my 13th birthday, I had been gifted tickets for another Boyzone concert again, the date coinciding with my birthday. Thirteen was a big deal, it was when you officially became a teenager. My friend had baked me a cake and everything, and I’m not 100% sure whether eating that cake had anything to do with it (I still can’t think of that type of chocolate icing without feeling sick) but the next day I was in agony with stomach pains.
It was a Saturday because I can never do anything simple, and I had to go out to the EMDoc. By luck, it was a GP from our own surgery who I’d seen many times as a child, and so he was very thorough. Perhaps a little too thorough because he suspected I had appendicitis! I spent the next two weeks in the paediatric room in the observation ward of the local hospital. It was a small set of two rooms that were connected to the larger ward, separated to give the children privacy from the adult patients. For the first week I was there I had a roommate; a girl about the same age who had broken her entire leg in multiple places while skiing. The second week I was on my own.
It wasn’t the best experience of my life because my parents could only visit during visiting hours. I was very fortunate that the room was well equipped with a TV and video player, and my parents were able to spoil me with new videos and books to keep me occupied when I was alone. I slept most of the time because I was so sick and I was being starved because I couldn’t keep any food down. I was hooked up to an IV drip and was being awoken multiple times in the night to have my temperature checked.
After two weeks my bed was needed. I was still sick, so a transfer was arranged to another local hospital that had a dedicated children’s ward. The ward I had been in was not supposed to be for long term patients, it was as it was named, for observation. The idea was that patients were kept there to be observed for a bit and then off they trotted. By this point, they had clearly ruled out appendicitis but I was still not getting any better. The doctors at the first hospital had no idea what was going on, however, they weren’t paediatric doctors so they actually didn’t know what to do with me.
I was sent to the local hospital where at first I appeared to get worse again, and then I settled back down again. I found out that the ER doctor who had given me the first IV drip in the back of my hand had blown the veins open in my hand which the nurse/doctor who told me was not at all impressed with. I know now that this was probably due to my hEDS and whenever I have to have blood drawn medical professionals have great fun chasing my bendy veins in my skin. Back then I had no idea, I just had this huge black and blue bruise on my hand that took weeks to heal.
I was in the second hospital for about three or four days before they discharged me. Apparently, I’ve had an acute viral infection. The difficult part still lay ahead of me; recovering from being starved for two weeks. The thing that most people don’t realise is that when you’ve not are solid foods for that long your body can’t digest them properly. My parents were given very specific instructions about what I could and couldn’t eat. I think I wasn’t allowed gravy for quite a while because it was too rich for my stomach to handle. I had to build up my diet bit by bit from scratch. That took another couple of weeks. I was being sent work from school and thankfully year 8 is the least important year of secondary/primary school so I didn’t miss any important exams.
The only thing I remember happening when I returned to school was dealing with my personal tutor who would not believe that I had been in hospital. She accused me of skiving from school. She was new to the school and had barely known me for a month, but I’m pretty sure that my head of year or any of the other teachers could have (and probably did) tell her that I wasn’t a problem student. Nevertheless, she was extremely persistent. A letter from my parents was not good enough for her. My dad ended up having to battle it out with her and involve my head of year to stop me from being punished for being IN HOSPITAL and probably to stop her reporting my parents for my apparent truancy. I get the feeling that she was an extremely new teacher, perhaps our school was her first teaching job. Unsurprisingly she wasn’t asked to stay another year.
Body dysmorphic disorder
It probably comes as no surprise to anyone reading this story that I never put on weight as a teenager. It was every teenage girl’s dream, right? To eat anything they wanted and never put weight on. I remember two of my older cousins remarking at how jealous they were that I could do that. I never understood it until I got to my twenties and started to put weight on, at last, my metabolism finally catching up to me. That’s coming in part three though, for now, I want to talk about how confusing their comments made me. They are 3-4 years older than me so I was very confused as to why they were jealous of my weight.
Because I was huge. I had thunder thighs.
You see, I looked at my thighs and I didn’t see skin and bones. This was due to body dysmorphic disorder (BDD). While I was convinced I had massive thighs I didn’t have an eating disorder or problem with my weight. It was like seeing through one of those strange mirrors at a funfair where your view gets distorted. I think what saved me was that I logically knew that 8-9 stone was not overweight. I just didn’t like the look of my thighs, I was convinced something was wrong with them.
I actually didn’t realise how thin I was until my fiance looked at this photo of me in my prom dress and said “Wow, you were too thin back then”.
I was shocked. No one had ever said that to me before. Then I looked closer and saw that he was right. The bones in my collarbone popping out, and my arms were too thin. I remembered that the dress, my beautiful dress, had been a size 8 – and I had to have it taken in because it was too big.
At the time I had just thought “it’s the lack of boobs” because I had none. Again, I’ll get to that in Part Three. But it wasn’t. He was right, I was too thin and I didn’t even know it because to me I was too big. At school everywhere, I went the other girls were always passing judgement on everyone. I can remember walking from the girl’s changing room in a PE skirt with shorts underneath along the line of classmates sitting, watching. The girls in one line, the boys in another. I was itching to pull the skirt down, to smooth it, to do anything to hide my legs. I didn’t dare though because everyone was watching – at least until the next victim came out behind me.
When we got changed for PE we all did it in a secretive way, hiding our bodies while slipping in and out of our clothes so no one got a good glimpse of your body. The girls who were most conscious of their bodies went behind a wall or into the old show cubicles. I didn’t bother even trying to get one; only the popular girls got them. I wasn’t as paranoid because I’d grown up changing in front of other girls due to Brownies and Guides, but I became paranoid because of the comments and the looks.
I look back and I wonder how much of it was jealousy. How many of them looked at my figure and were jealous that I was thin. I bet they had no idea that in my head I thought I was fat.
Flu the First
Influenza has left a lasting mark on my life which I will get to later in another part of my disability story. My first interaction with the flu happened when I was a teenager. I’m a little fuzzy on what year it happened exactly. I know it was the end of year 8 or year 9 because the summer of year 10 I had work experience, and the following year I left the school. I think it must have been year 9 because that was when the school started to fall to pieces. You see, my secondary/high school is infamous. Not just famous, infamous.
It was all over the news back in the day because our headteacher stole all the money.
You know how kids joke about how a teacher must be embezzling when they show up with a flashy new car or clothes? You might laugh about it, but ultimately write it off as teenagers being teenagers? Well, I did just that. I was like, yeah right, no way is the headteacher actually stealing the money. Someone would know!
Oh yeah, people knew. They covered it up.
If you want to know more you can read all about what happened and the court case in these articles: Evening Standard, and the BBC. I’m only bringing it up because it’s relevant to what happened while I was off for two weeks with flu – the school closed early for the summer holidays. I can’t remember the exact details, mainly because I was extremely feverish and ill as you can imagine, all I know is I was beginning to get better slowly and a letter appeared one day from the school informing parents that the year was being cut short. Instead of returning after my illness I sort of just disappeared into the summer holidays.
It still feels really surreal thinking back on it, like wait, did that actually happen? I’m not sure if they couldn’t afford the teachers, or to keep the school open, either way, that was it. School ended early and I didn’t get to say anything to my friends because this was before the days of everyone having the Internet or mobile phones. I remember a rather odd summer hanging out with people who lived near me that I would never have hung out with before and never did ever again.
Those pesky feet again
The hairline fracture when I was 11 was just the start. Out of the blue, my ankles began to suffer frequent injuries. Sprains, tubular grips and trips to the ER became the norm. By the age of fourteen, I knew way too much about how to bandage an ankle than any teenager wanted to know. I remember walking down my grandparents’ road walking their dog with my dad and – once again – almost tripping over something on the ground. My dad had been carefully watching me as I did it and said that he watched as my ankle turned too much as I stepped on the crack in the pavement. While most people would have just stepped on it and their feet would have handled the irregular ground, my ankles were twisting too much in their sockets.
We could see it happening, we knew there was a problem but we had no idea what the problem was. It came to a head though when I was 15 and I was stepping off the school bus. Someone behind me pushed forward (I don’t know if it was a deliberate attempt to make me fall or not…) and I slipped off, twisting my ankle badly and falling out of the bus. I fell onto my hands and knees and triggered an asthma attack with the pain. I don’t remember what happened next, I just remember I ended up sitting on the school bus while everyone went off to school as the school nurse came down to me.
She then made me WALK all the way up to the top of the school where her office was. I’m sure that did a world of good for my injury which turned out to be quite catastrophic. By the time I got to her office my foot was swollen and turning BLACK. Not blue or purple, but black.
Another trip to the ER and this time it wasn’t a simple sprain; I had torn ALL the ligaments in my ankle.
I can’t remember exactly how long it took to heal. It was months and unsurprisingly required physiotherapy to restore the movement and strength of my ankle. The one positive thing from such a horrible injury was that we finally got answers. I was referred to a paediatric foot and ankle specialist who immediately recognised hypermobility syndrome (this was over a decade before it was recategorised as joint hypermobility spectrum disorders). I was given a series of tests which I now recognise as the Beighton Score and I was never given a score, although doing the test myself I can see I’m pretty high on it.
For the next year, I was seen by them as an outpatient and given physio on both ankles. I was, in fact, spoiled because I have never had the same care and attention from a specialist or an NHS physio ever since (I say NHS physio because I saw a private physio in my late twenties who was amazing, but that is a story for another day 😉 ). My physio was a wonderful woman who was strict with me, although not harsh. She wanted to help me and doing that meant ensuring that I did a lot of work with her and at home between appointments. I’ll never forget my first appointment with her when she put me on a balance board and exclaimed, “you have no balance!”.
Well, that made a lot of sense.
All my life I had tried to do things that other kids did and failed. I had never mastered riding a bike (Ryan’s story in Doctor Who meant so much to me because I saw myself in him) and roller skates were as just as much a disaster. My dad spent hours in the garden with me trying to help me perfect a forward roll in primary school because the teacher was adamant that we could do one – I could manage a backwards one fine, but when I tried to do a forwards one I always fell to one side. So many things I couldn’t do suddenly snapped into place when she said that. I wasn’t a failure. I had something wrong with my body.
I still didn’t recognise myself as disabled though because it was just my ankles. Even when I wore support bandages on my ankles every single day for years. The specialist had given me these special ones to wear and I couldn’t get on with them. They were too tight, too bulky and uncomfortable and worse, for a teenager, you could visibly see them under my tights. We weren’t allowed to wear boots to school so they could be seen and I was already being bullied badly enough (I’ll get to that later). So my dad and I worked out an alternative; sports support bandages. Perhaps not ideal, however, they did the trick.
I was also banned from doing “high contact sports” which I was extremely happy about. I hated sports and this got me out of the worst of them. Football, netball, rugby? I used it for anything that would put pressure on my ankles. Bye! Despite having the same letter and the same teacher for the last two years of secondary/high school I still had to pull the letter out every single week. I think this is one of the things that made me never connect disabled with me; nowadays even just my asthma would have marked me as a student who needed to be watched during PE. Having a health condition that affected my mobility would be simply due to the amount of health and safety rules now in place in schools. By being disregarded, and at times actually being given looks and sighs as if I was skiving out of PE lessons on purpose, never mind the official hospital letter with full letterhead and signed by the pediatric foot specialist which explained in medical jargon why I was exempt. I wonder whether the teacher actually fact-checked the letter. I was a straight-A student, but I was also clever enough to fake something too. I was just too much of a goody-two-shoes to actually do it.
I can’t remember whether it was the ankle injury or some other illness (to be fair with me it could have been anything!) but the same year I ended up missing some of my mock GCSEs. I didn’t know it then but this would be one of many times in my life that I would miss examinations and have to later resit them. I remember going into the Special Education building for the first time ever in my life and sitting in there for hours unsupervised as I wrote the exams I missed. I mention the specific building because as an adult I realised I have dyscalculia, a learning disability in math. The smart kids didn’t get learning disabilities though; we were just “bad” at a subject. It was better to put us in the higher bad for that subject because we had a higher chance of getting a better grade, and it probably looked better on paper for the school.
I only scraped a C on my maths GCSE because my dad helped me get through it by hiring a private tutor, a friend who was a retired Maths teacher. I hated those sessions with him with a passion. He was a lovely man, and a great teacher, but I struggled so much. Years later when I wanted to become a teacher in Scotland I found out that my GCSE in Maths didn’t equate to a C in Standard Grades (the Scottish exam equivalent) which is what is needed to become a teacher. I would need to study and pass Standard Grade Maths first. My fiance fully supported me and believed he could get me through it, and as much as I appreciated that I wisely chose Information and Library Studies instead. One of the best decisions I ever made 🙂
Now as an adult I can look back and see what triggered the sudden change in my body’s flexibilitiy; hormones. I am one of the very unfortunate young people to have started their period in primary school, at age 10 to be exact. Hormones increase flexibility so as I started to grow and my body was flooded with all these new wonderful hormones my flexibility levels began to change as well. Every month I now know to expect a pain and flexibility flare up with PMT, but back then I and my parents had absolutely no idea what was coming for us.
But hold on, isn’t hEDS a genetic condition? Didn’t one of my parents know? No. We now know that the gene came from my dad because over the years we’ve recognised the signs in him. EDS is much more common in women than men (70% in women compared to 40 in men) 1 and due to various biological factors the condition manifests differently in men and women 2. We also had no knowledge of any past or present family history until long after I was diagnosed. Once we learned that my dad’s cousin also had the condition we were able to confirm exactly where the gene came from.
Over to you
Thanks again for joining me on this journey as I share my disability story with you! I tried to keep the teenage angst to a minimum! I didn’t cover every single thing that happened to me or every single illness and injury because to be quite frank we would still be here this time next year. Plus a lot of things began to just smoosh together. When you’re ill that much, or you’re being harassed constantly by people even with a photographic memory it’s only the really traumatic moments that stand out after all this time. The rest is just this blanket of general suckage.
In a few days, I’ll continue my story with my time at 6th Form college and my first time away from home as I headed to University.
As with Part One, I’m not going to turn off comments because I am sharing this for a reason, however, please remember that I don’t have to share any of this and any passive agressiveness, nastiness or “well actually”‘s won’t be tolerated. You’re guests here so please act like it 😉 Genuine questions are welcome.
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