How I Found Out That I Was Living the Life of a Zebra | A Life of Chronic Illness With EDS – For a very long time, looking back to primary and secondary school, I remember having trouble with my limbs and more importantly my joints. As a child you’re used to getting bumped around and bruised, and that is exactly how I remember my childhood, not noticing anything of concern. I never thought to bring things up to teachers or to parents because I would have a bit of pain and shrug it off. There was no worrying as a kid, as I was too focused on other things; like friends, socializing and school work. There are however, moments and events that are slightly alarming, all of which were swept under the carpet when I was younger.
My First Alarms
The first of these was my love of sports. I remember my favorites being basketball and badminton. I didn’t have the confidence to try out in teams, but still I enjoyed the sports all the same. Then I began noticing that I would tense up afterwards and find that I may limp or struggle with standing up and sitting down and my hips locking in place. When it came to a sports day and I realized I would be in pain from walking around, let alone doing extra activities and having to sit it out. I remember my parents shrugging it off saying it was probably growing pains and later on mentioning that it might have been arthritis, but that it’s something people just have to get along with.
The second instance I remember was my GCSE art coursework. I have always loved art and I remember working so hard to get all my work done inside and out of school, during breaks and even when some work of mine went missing, I shrugged it off and redid the whole thing. I also remember the pain that I would get in my wrists, causing me to struggle to do anything else after doing what I could with my art work. It wasn’t long after that I was given wrist supports and told that I may suffer from repetitive strain injury. I remember wearing those support braces right to the end of my GCSE show when all the work was displayed and realizing that I had begun wearing them more often than not.
Where I am Today
Now ten years later, I am currently twenty five years old and after finishing school and an art degree I am still suffering from the same issues that I have spoken about. Support braces and bandages have been my friends for many years and although I have suffered, no doctors have ever looked into the issue, no matter how much I have asked. The idea that I may have arthritis was rejected due to my age, even though that is not an important factor, and there were no other possibilities given to me for the cause of my chronic pain.
I cannot stress enough, if you feel that something is wrong with your body, do not give up on that idea because someone does not believe you. You know your body better than anyone else and the best people to speak to about these issues are others in the same situation as you, not just people who are there to diagnose you. I have a friend who, just like me, has many health issues. During a look on Facebook I noticed that she had put up a post about EDS (Ehlers-Danlos Syndrome) and Hypermobility. When I saw some of the photos of the awkward angled joints and problems people had with their muscles, tendons, joints etc. It was almost like a bulb had turned on inside my head. All these years of being told I was fine and now I had seen something that was calling out to me. It was me. It all made sense.
Getting a Diagnosis
After speaking to my friend in length and her telling me her experience with this disorder, and how she had difficulties with her GPs also, led to me biting the bullet and making an appointment. When mentioning it to the GP she looked intrigued at the idea that I would bring forward an uncommon disorder and ask if it was possible that I may have it. She was unsure, but decided that she would pass me over to Physiotherapy and see if they were able to assess me.
Now I am not usually a fan of the doctors, although I do spend a large amount of my time in there, but this specialist was a godsend. He started by listening to my worries and performed a few checks on my joints and calculated my Beighton Hypermobility score to be 9/9. He said 100% I had Hypermobility. He stated I should have been on some form of pain medication, which I was not and decided to start making referrals there and then. I was told that my hips are unaligned, my arches in my feet were too low, I had a bad stance and walk due to my knee and hip problems and that my body was putting pressure on my tendons and ligaments rather than my muscles which was causing me problems with my bones. He also told me that this would have been the first diagnosis of anyone who would have seen me, if I had been seen ten years ago, rather than letting my body and the pain get progressively worse. He gave me exercises to strengthen my muscles and has referred me to multiple specialists, due to an elevated ESR in my blood tests, which has also been ongoing and could also point to arthritis as well as a previous cartilage and connective tissue problems that may link to EDS.
This meeting on its own was so overwhelming for me. After years of no answers, I was given all this support from one person. All I needed was the RIGHT person to see me. This meeting has started the ball rolling and I am currently waiting for my specialist reviews before anything else can continue, but I’m so glad that I was looking in the right place and speaking to the right person at the right time. I was also told the most amazing information by my friend at the time.
What Is a Zebra
I had seen that a lot of people with chronic illness would call themselves Zebras and I had no understanding of what that meant. Now I completely understand. It’s from the phrase, ‘when you hear the sound of hooves, think horses, not zebras’. This is due to doctors being told that usually the most common reason is the right one. This is not always the case and these people with rare conditions struggle to be heard as I was and it is becoming apparent that my issues were never that of the horse, I was always going to be a Zebra.
About the Author
Hi my name is Sophie Doolan, I’m from Walsall in the United Kingdom and I have multiple diagnoses from anxiety and depression, to asthma and hyper-mobility, whilst still awaiting other treatments and official diagnoses too. When I am not in the hospital or seeing doctors I love arts and crafts, creating teddies and painting always helps me relax, as well as baking, reading, playing video games and travelling. I am a part time youth worker and spend a lot of my free time with my four dogs. I love writing and reaching out to other people who may suffer or know of other people with illnesses who may need support, as others supported me through my dark times.
How I Found Out That I Was Living the Life of a Zebra – A Life of Chronic Illness