‘I can pull her arm out of the socket. I can put my finger in.’ He examined me, muttering, ‘Oh wow.’: Student diagnosed with Hypermobility Syndrome, ‘I’m proud of my invisible illness’

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“Since I was little, I loved playing sports. Any sport. Every sport. Even though you wouldn’t know it to look at me, chunky ten-year-old me was playing football, tennis, and hockey after school. I looked forward to after school and being able to run around like the kid I was.

This continued into high school, where I used to swim, play badminton, and basketball. I’d go to the local sports center once a week to play badminton with my mum. We’d rent a court out and play for an hour or so, and I looked forward to it immensely every week.

Fortunately, by the age of thirteen, I’d grown in confidence enough to reject the ‘boys club’ atmosphere of sports at my school, and for our week-long end of term activity, I chose Sports Week. It turned out I was the only girl there, out of two groups, but I didn’t care, as I got to run around for a week straight, and did the same the year after too!

Basketball quickly became my favorite pastime, and the local sports center’s basketball club became my favorite place to be. I had a much better social life there than at school, as I felt I was just being myself, whereas at school I was very academic and people didn’t know I just wanted to throw balls around all day! I remember when we were being put into classes for P.E. and had to do a lap of the field to see what group we’d be in. Everyone, including my friends, was very surprised when I raced around and got put in the first group. Again, in science, we tested each other’s heart rate and a ‘sports’ student loudly announced there must be a mistake with my heart rate, as it was lower than his. Anyway, for me, sports were my secret world, a place where I understood myself and my place and could feel genuine joy.

Courtesy of Johannah Sangster
Courtesy of Johannah Sangster

When I started university, I was very keen to continue with sports, but my confidence had been knocked again by the ‘freshman 15.’ I was in charge of my food for the first time in my life and my diet resembled that of an unsupervised ten-year-old at a birthday party. After about 3 months (and more than 15 pounds), I realized this and began running every day to get myself back where I wanted to be. My evening runs at uni were a brilliant escape from any pressures, and I got back in shape fairly quickly. I was practically addicted to the high I got running to my limit, listening to my music, truly in my own world.

In my second year, I joined the university basketball team. It was amazing and felt so natural. We became the best team around, and I felt really valued for just doing something I adored. However, in my final year, something changed. I started experiencing pain in my ankles. I upgraded my shoes and carried on. But then my knees started hurting badly, so I took painkillers after exercising, ignored it, and carried on. My hips then started hurting, which I’d never felt before, but what was I going to do? I couldn’t stop playing. It was so important to me and I didn’t want to tell anyone about the pain in case I had to stop. I continued to attend training and matches for around a month, taking painkillers and energy drinks to try and get through it. I didn’t understand why it wasn’t improving. If it was a normal sports injury, it should have. I kept running and tried to keep the wincing to myself. I couldn’t lose sports.

Courtesy of Johannah Sangster

Then, one day, everything changed. I woke up, after having played a match and gone out dancing the night before. I’d been in a lot of discomforts, but as a 21-year-old, that wasn’t too hard to overcome with the use of excessive drinks at a nightclub. No one would have known anything was amiss and I wanted to keep it that way. I liked my life, I liked basketball and dancing. I wasn’t going to let them go because of some stupid pain.

Courtesy of Johannah Sangster

When I woke up, the pain I felt in my hip was unmatched. I couldn’t put any weight on my right leg at all. I stood up and fell onto my desk, and sat there on the edge, completely not knowing what to do. So I lay back down in bed.

I had a huge sense of ‘it’s finally happened.’ I had been shoving all thoughts there was something bigger wrong with my body as far away as I could but deep down, I’d known. I stared at my wall and knew this was going to change my life. I didn’t know at the time, but my hip had partially dislocated. This was when I had to get my first walking stick, as I physically couldn’t get anywhere without supporting my right hip. People talk about the step to using a walking aid, building up confidence. My experience wasn’t like that. I just had to act or I’d be stuck in bed. I assumed I would only need it for a short while.

Courtesy of Johannah Sangster

I didn’t know what to do. I had been acting as if everything was normal this whole time, so how could I begin to get across the severity of my situation now, when I seemed fine the day before? I was nervous no one would believe me and cursed my past self for being so stubborn.

Luckily, my flatmates were amazing and understanding. They weren’t used to me complaining about things so they took me seriously. I am forever thankful. Basketball was slightly more difficult. The team was doing amazingly and I was an integral part. I decided I’d have to say I was leaving the team and arrived at practice to do so. However, I felt very awkward and upset at this and ended up trying to run again. Of course, I couldn’t and told my coach. The other girls were encouraging me to keep going, to be supportive. They had no idea I’d been hiding the pain for some time. I didn’t know how to tell them it was so bad I couldn’t be there, so I didn’t.

Courtesy of Johannah Sangster

I saw the team’s physio, who examined me, moving my body in all different directions, once muttering, ‘Oh wow.’ He was the first person to tell me I had Joint Hypermobility Syndrome. My joints are not stable in their sockets, leading to an excess range of movement, and the risk of dislocations.

I didn’t really understand how being too flexible could possibly be causing that amount of pain and went to my doctor. Well, I tried to. I phoned the surgery and asked for an appointment for joint pain. I was given an appointment with a nurse, who I told everything to. For the first time, I explained how I couldn’t even walk into town anymore, let alone do anything I enjoy and repeated what the physio had told me. This was hard and strange for me to do, after trying to hide my symptoms for so long, but I knew I had to.

Courtesy of Johannah Sangster

This was when I was faced with a stark reality check of what it would be like to live with an ‘invisible illness.’ The nurse told me because I was ‘young, a healthy weight, and since it wasn’t affecting my daily life,’ there was no need for further action, and to take paracetamol.

I later learned the term ‘medical gaslighting,’ which is what this was. I had expressly told her each element of my life had changed dramatically and instead of making a note of any of this, she told me it hadn’t. I was completely new to this medical setting and had no idea about self-advocating, so I just left, completely disheartened and frustrated.

Courtesy of Johannah Sangster

Luckily, I had people around me who encouraged me to make another appointment so I called again and insisted on seeing a doctor. This time, he was very understanding and undertook blood tests and a physical exam. I left that appointment with another appointment at the local hospital, to see a physio, as he saw what my sports physio had seen before. Unfortunately, the physical examination meant seeing how far my limbs would go and although I left feeling much happier, I also could barely walk. Although it was only ten minutes home, I had to sit in a nearby pub until my mum could pick me up. I had a double gin and tonic and wondered what the next step would be.

My mum was able to come along to the hospital with me and witnessed the physio declare, ‘Yes, see, I can pull her arm straight out of the socket. It makes a hole here, see, I can put my finger in it.’

Courtesy of Johannah Sangster

This was the start of three years of several appointments where the practitioner would give the same diagnosis and advice: rest and small physio exercises. However, it still took me a couple of years to fully accept this. The condition I have can’t be ‘cured,’ so I’d convinced myself there must be something else wrong, which can be fixed. I told myself if I just had enough money to go to a private specialist, they’d find the real problem. However, in 2019, when I did manage to see one of the best private rheumatologists in the UK, he was only able to confirm what the others had told me. He also pointed out my spine was ‘particularly hypermobile,’ which meant my condition as a whole was exacerbated and lead to issues like scoliosis and lordosis.

Courtesy of Johannah Sangster

This news is what I needed to come to terms with my new reality. Since that point, I’ve embraced my slightly different life entirely, celebrating the purchase of a power chair for the way in which it’s added so much freedom back to my life. I’ve also just completed a Masters in International Meetings and Events Management, my final project of which I based entirely around Accessibility and received my Distinction. I’ve created an Instagram account with the aim of sharing my research, normalizing young people using mobility aids, and answer questions from people who are where I was a few years ago. I’ve also gone to the other end of the spectrum with my new clothing brand. After years of hiding and repressing my illness, I now sport ‘Invisible Illness Squad’ apparel, to take ownership of, and pride in my situation.”

Courtesy of Johannah Sangster
Courtesy of Johannah Sangster

This story was submitted to Love What Matters by Johannah Sangster. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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