What International Day of The Zebra Means to Me.
It’s international day of the Zebra, so you’re probably wondering why you’re reading a blog about disability and chronic illness. You’re not wrong, on the surface, me being a disabled person and a zebra have absolutely nothing in common, apart from the fact I do love a fashionable smart black and white ensemble.
The term 'zebra' is often used within the medical field to indicate a rare or unique condition. It’s a metaphor for rare conditions because just as a zebra is a unique animal, a rare condition is unique and stands out from the more common conditions. Within the Ehlers Danlos Syndrome (EDS) community, you’ll often hear the phrase "when you hear hoofbeats, think horses, not zebras." It’s a phrase often used in the medical field to remind doctors that when presented with a patient's symptoms, they should first consider the most common or likely diagnosis first, rather than jumping to a rare or unique diagnosis.
In the case of EDS though, we are zebras- and lovingly adopt the zebra as our mascot. I have HEDS (Hypermobile EDS, which is no longer classed as a rare condition, just rarely diagnosed.) EDS is a genetic disorder that affects the body's connective tissues, leading to hypermobility and increased susceptibility to injuries and dislocations.
The condition is often misdiagnosed or not diagnosed at all, due to its rarity and the lack of awareness among many doctors. In my case, I first developed symptoms aged 12 when I dislocated my hip during cross country (a gruelling PE activity at the best of times anyway) and spent a week in the hospital while doctors tried to figure out what was wrong- they didn’t. I was finally diagnosed after my health got progressively worse year on year, at the age of 18.
The use of the zebra as the mascot for EDS highlights the importance of awareness and education within the medical field, as well as the importance of patient advocacy. Many individuals with EDS and other rare conditions have to advocate for themselves and educate their doctors about their condition, as many doctors may not have encountered the condition before. In my case, I owe my diagnosis and patient advocacy to my mum, who didn’t believe the doctors who told her I was making it up for attention, just depressed, and needed to get off my phone and go to bed on time and exercise more.
Access to a supportive diagnosis is just the start for people with disabilities and chronic illnesses. Even with a diagnosis, individuals with rare conditions often face barriers in accessing healthcare, accommodations, and support services. These barriers can include a lack of understanding on what it means to be disabled, a lack of accessibility, and a lack of service support provisions.
I faced many barriers during those teenage years while I was undiagnosed. After leaving school with 12 GCSEs and 2 BTECs I lasted 2 days at college before having to drop out. Higher education wasn’t accessible to me, and it felt like I was written off from ever achieving anything- as a ballsy ambitious wannabe entrepreneur even then, this was incredibly difficult to grieve.
It’s isolating, especially as towards the last few years of being a teenager I was housebound, coming up to bedbound. Community isn’t something you can access online the way you can now, and even now we still have a huge way to go. Social media was, and still is on my bad weeks where I struggle to see people, a lifeline.
Education for me came in the end from an Open Degree from the Open University. I started as a ‘mature student’ at the age of 21, which in itself speaks to the hold that achieving things at certain milestones has on our society. I studied biology, chemistry and social care- my interests at the time as my world revolved around my health and care. Believing even then that I would never be able to hold down a job, I also chose these subjects so I could look doctors in the eye and tell them I understood. That I was their equal, and they no longer had the power to fob me off. I knew the big words too.
Volunteering took me into my path of employment and then starting my own company. For many disabled people though this is a difficult transition to make, and I always make a point of pointing out that I was only able to do that through the support of family- both taking care of me and financial support. Acknowledging privilege even when you feel like the whole world is against you is important. My path even with that support was, and still is, filled with blocks, barriers and hurdles- some impossible to overcome alone. It is my aim, through SIC, sharing on social media and advocacy work, that I clear the path as much as I can as I go.
But I am hopeful, we are seeing a shift in the narrative of disabled people in media, and organisations like SIC that was launched coming up two years now are offering support where there was limited support before. EDS is also becoming more known, as though there is still a stigma tied to the diagnosis- usually those diagnosed are biologically female, and the often ‘invisible’ symptoms mean when presented to medical staff it’s written off as PMS, anxiety, depression, attention seeking or drug-seeking etc - as a community, the research efforts and educational tools developed means we’re seeing far more awareness of the condition.
I’m honoured to have a platform where I can champion EDS, and the wider disabled community, to show the world what we’re really capable of.