Hey! TJ here from The Gibbons House. If your new here, then welcome, if your returning, hello again! How is it September already? It's nearly spooky season!
If you're here, you either have or know someone who has Joint Hypermobility Syndrome (now known as Hypermobility Spectrum Disorder (HSD) or a related condition or you are trying to increase your awareness of less known conditions.
In high school I was diagnosed with Joint Hypermobility Syndrome (JHS). This is my Zebra story.
Disclaimer! I am not a doctor or medical professional, this is only my experience regarding this disorder. For further information please visit www.hypermobility.org and www.ehlers-danlos.org!
Firstly, what is Hypermobility Spectrum Disorder?
JHS is a condition which is now known as Hypermobility Spectrum Disorder. Basically, anyone who doesn't meet the criteria for Ehlers Danlos Syndrome (EDS) but suffers from Hypermobile joints along with other symptoms has HSD.
Ever heard anyone say they are double-jointed? Yeah, that's not a thing. They have some form of Hypermobility.
Essentially, the 'Sticky stuff' that holds us together called Collagen is faulty or there isn't enough of it for our bodies to work properly. Collagen is what helps our entire bodies function, it provides support, structure and strength.
Around 1 in 10 people are Hypermobile (According to Hypermobility.org), so it's quite common and you could go your entire life without knowing or having any symptoms, but a handful of those are symptomatic.
It's now called a Spectrum Disorder because it can affect people in different ways. I am a part of so many communities for people with HSD or alike and I have found no one with the exact same combination of symptoms as me.
Some symptoms of HSD include but are not limited to:
Chronic pain
Chronic Fatigue
Bladder and Bowel issues
Issues with Anaesthetic
Dental issues
Dislocating joints
Posture issues
Mobility issues
Stretchy skin
Bruising easily
Why the term Zebra?
When you hear the sound of hooves, think horses, not zebras.
That's what medical professionals get taught. Rare conditions are exactly that: rare. They are taught to look for easy and common answers, because 9 times out of 10, that will be the answer they need. But it makes getting diagnosed with a less common condition more difficult. Some people never get a diagnosis, some people wait years for one and others get misdiagnosed.
The issue with being a Zebra is that rare conditions are not as well researched and understood as common ones, which means no one fully understands the condition and most professionals don't know how to handle them.
It can take up to 17 years (according to the National Library of Medicine) for new research to make its way into common day practice. Good news for the future generations, not such great news for us.
I've always had symptoms. I was great at Gymnastics (before I quit) because I was naturally flexible, I was always injuring myself and I was beyond clumsy.
When I hit puberty, my symptoms changed and progressed. I began experiencing pains and aches in my joints, alongside muscle spasms. It was assumed they were growing pains and would stop, but they never did. Many injuries I sustained should have resulted in fractures, so we would sit in A&E for hours for them to X-RAY and tell us it was only a Sprain or Strain.
I would express that my wrist hurt, and then the next day it would be something else. I wasn't always a truthful child, so it was hard for the adults involved to believe that the pain was jumping around so much, and that sometimes it could be in multiple places at once. Not to mention, it wasn't exactly common for teenagers to have so much pain, so the likelihood was the pain was growing pains or I was using it as an excuse.
But I was feeling the pain. So I assumed it was growing pains because adults were normally right.
After some time, my Mum became suspicious of the pains as they were persistent. I saw my Doctor who agreed it was probably just growing pains, but they referred me to a Physiotherapist for a full evaluation just to be sure.
At the appointment with the Physio, he examined my joints and how far they could move (during which my Mum was squirming because of the movements I could do) and took me through the Beighton Scale which records a persons laxity. A score of 5 or more in adults and 6 or more in children counts as hyper-laxity. My score used to be 7, now its 5 due to strengthening exercises.
I was diagnosed with Joint Hypermobility Syndrome.
The Physio gave me some exercises and told me to go back in a few months to see my progress, he told me that the condition was likely to get worse and staying strong would be my best bet.
Personally, the exercises he gave me didn't work, I felt no difference and saw no difference, so I didn't go back.
I was confused. I had been given this diagnosis and I had no idea what it meant.
I wasn't really bothered about finding out more about it at the time. I was given a reason for my pain, given painkillers to take on the bad days and that was good enough for me. I was given options for my exams at school like extended time and use of a computer for long writing exams due to the pain writing causes in my wrists.
But then my symptoms started affecting my daily life. One summer I ended up being on crutches for 6 weeks due to my ankles constantly rolling (I believe that my ankles were dislocating but I was unaware of this at the time), but because I was constantly putting pressure on my wrists, I was in agony with them, too.
I went back to the Physio who again gave me some exercises and sent me on my way with a referral to Orthopedics. There I was told I have flat feet and bowed Tibia bones (shin bones), they gave me insoles to increase the arch in my foot and suddenly all of my ankle-rolling was a thing of the past. I was ecstatic to be able to walk without the fear of going over for no reason.
That's when I really started researching the condition I had been diagnosed with.
And the more I read, the more everything made sense.
I had stopped running as a hobby when I was diagnosed due to the Physios recommendation, and I wasn't doing any physical exercise other than Archery. Since I had stopped running, my ankles had become weaker and they were looser.
The issues I had with Anaesthetic were related, as were my IBS symptoms. I cried every time something I suffered from was mentioned because it made me feel less alone with it.
My mum was amazing (and still is) at trying to understand the condition, but it's hard to understand even as someone who suffers with the symptoms let alone a viewer from the outside.
I started college doing an Outdoor Adventure course, it was fairly active and we were paddling, climbing and hiking regularly. My muscles became stronger and I was suffering less with my joint pain. I then found my passion for rock climbing, and that's when things undoubtedly started to improve. I began a job in a climbing centre and quickly became an instructor, where I was climbing 3 times a week at least. I loved it, and I loved the strength that came with it. I rarely suffered with injuries and the pain was manageable.
I went to Uni and studied Outdoor management, which again was quite an active course. Alongside I was still working at the climbing wall, climbing at least once a week and going to archery once a week. Things were feeling great. Some of my class mates were amazing, too. On large hikes, they would take my bag for periods of time so my body wouldn't get too tired too fast. It was in their own interest, too, so we didn't have to keep stopping for me to rest!
Don't get me wrong, there were things I had to sit out of for my own safety and the groups, and that always sucked.
And then Covid hit and all hell broke loose.
I couldn't climb, I couldn't shoot. My physical and mental health suffered. I tried to keep up regular workouts at home but it wasn't the same. We went for household walks every day, but it wasn't enough. The pain became bad and I relied on pain killers to get me through the week. It was during this time I started experiences Restless Leg Syndrome. The easiest way to describe it is it feels like ants are marching along your muscles under the skin.
When the restrictions lifted, I asked to be referred to the Rheumatology department for some pain management and some advice. Hopeful, I went into my appointment with questions I needed answers to.
I left feeling more confused than when I went. The lady re-diagnosed me with HSD and told me that I was 1 point away from being diagnosed with EDS. I asked my questions, at which point I got given a leaflet to read and was told that's all they could do.
Facebook became my go to for help and advice. I joined group after group for those with Hypermobility disorders. It was the only place I felt understood and not so alone with what I was going through. I began to understand the condition more, but I still to this day find out new things related to HSD.
Now, I am so much stronger due to working on a farm, and I can tell when I am less active as I become stiff and the pain increases. Staying active is a huge thing for me and my health, and I am grateful that my Mum encouraged me to play outside as a child instead of gaming or watching TV for hours because it helped build up my love for nature which is why I am where I am today.
I still get aches and pains daily, and muscle spasms, but I understand my body better and I am better at listening to it when it tells me I need to rest, mostly! I understand some of the triggers for my flare ups and am able to avoid them most of the time. I still get them, don't get me wrong, but I feel more in control.
When I roll my ankle (which still happens but no where near as often as before I got my insoles) I can be back up and walking within a matter of minutes instead of weeks, when the weather gets cold I use layers around the joints that suffer the most so they stay warmer. I take magnesium supplements to help with the Restless leg symptoms.
I have found ways over the years to help myself.
I also rescued an amazing dog who has made me get up every day to walk her, no matter how rough I feel. I now find walking first thing sets me up for the day and adds to the fitness that keeps me in better form. She has been a great addition to my life and has helped my mental health dramatically (other than when she gets injured, then she makes it worse, but it's worth it!)
Spreading awareness of rarer conditions has been a passion of mine for a while, now. I will always try to bring it up into conversations where possible.
Not in a 'feel sorry for me' way, but in a way that will raise awareness of hidden disabilities and their affects on people. I hope that those people then strike up conversations about it with others and so on.
Over the years I have dealt with skepticism, bullying and disregard by old friends, family and medical professionals. Just last year I was told by a GP 'Stop looking for help and answers as it's something that you will have for the rest of your life, so just deal with it'.
It can be hidden disability (not in everyone's case, I know), and to a lot of people that means it doesn't exist. Even if people can see it, it doesn't mean they are willing to believe or understand it. Comments like "But being flexible must be useful" are always fun to argue, too.
If you feel confident to do so, strike up conversations about yours or a friends diagnosis, get people talking about Zebra conditions.
If you have any questions, or you want to share your own experience with me, please reach out. I would love to chat with you.
The main thing I want you to take away from this is that it can be lonely and scary dealing with a condition that's not well known.
If you are the one going through it, know that you are NOT alone. There are charities and services out there for us, and there are people like me. We are more common than you might think! It turns out that my two best friends are also Zebras, and I know others who are too.
I wouldn't be where I am today without my amazing support system, but my Mum gets most of the credit for dealing with me whilst I was at my worst!
If you know someone who is a Zebra, let them know they aren't alone. You may never be able to fully understand what it is they go through, but you can be there whilst they figure it out and be a friend they can turn to.
If you or your friend are struggling with mental health or harmful thoughts, please find the help needed. Samaritans offer free help to those who need it, visit www.samaritans.org for more information.
Follow me on social media If you want to get in contact with me (even if its just to say hi!), you'll see posts reminding you about new blog posts too!
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