When Zebras Fight Back

Ever since I was a child I was told my strange symptoms of joint pain, fatigue, headaches, and breathlessness and light-headedness on exertion were "all in my head", "stress", "attention-seeking" and from "laziness", and I just needed to get more exercise.

Eventually I came to believe that pain and discomfort must be the normal human experience as other kids weren't complaining about being in pain and discomfort. I decided I was obviously being a crybaby over nothing so I learned to shut up and live with pain and discomfort as part of normal life, pretending to be fine, just like other normal kids were doing. My symptoms, see-through skin, loose kneecaps and legs that bent too far, became nothing more than parlor tricks to be paraded about at my parents' parties.

It was only when I was 40 years old that I was finally diagnosed as having Hypermobile Ehlers-Danlos Syndrome. It finally vindicated me of all those damaging childhood labels and I went through a long period of reframing my past.

This article is not about that as there is too much to unpack and wounds that are still raw.

I believed that having a diagnosis meant I would finally be taken seriously, however, I still continued to encounter ignorance about the disease and the old-school attitude that Hypermobile EDS wasn't a real disease. When your symptoms are only mildly annoying or tests all come back normal you begin to question your own sanity and feel powerless to object to diagnoses that make no sense. However, there are times when you just know that there is something wrong.

I recently had an incident where I was admitted to hospital with chest pain and yet again I had a doctor dismiss me as being alarmist and not knowing my own body because my symptoms were minor and atypical.

That chest pain turned out to be a rare and potentially lethal form of heart attack.

Instead of letting it go as I have been forced to do so many times, because of the lack of evidence to the contrary, I had the proof that this doctor was wrong. And so I sent a letter of complaint to the hospital.

I am sharing it here to share my story and to inspire others with chronic conditions to believe what their bodies are telling them, even when doctors are telling them they're imagining things.

I would like to lodge a formal complaint about a doctor on the medical team who saw me on Saturday the 10th of January while I was in the medical assessment ward. I can't remember his name, it might have been Txxxx something or something Txxxx or his colleague might have been Txxxx. He was a white-haired gentleman of around sixty in age.

I was admitted with chest pain on Friday with slightly elevated troponin levels and high blood pressure, but otherwise normal vitals. On discussion with me he suggested I probably had gastric reflux, and talked over me giving me no chance to tell him that I do get reflux and heartburn, very occasionally, and know exactly what these feel like, and that the squeezing clamping pain I felt on Friday morning was nothing like that.

When I said I have Ehlers-Danlos Syndrome which puts me at risk of having vascular issues such as dissections, his response was "the hypermobile form of EDS does not get dissections" and went on to add that "heart attacks do not happen at night" (my chest pain began around 3.30am).

I am fully aware that doctors of his generation were taught to look for horses not zebras when they hear hoofbeats* , but this is not the 1950s anymore and I resented my symptoms being dismissed as nothing, and him treating me like a 'hysterical' woman.

If he knew Ehlers-Danlos Syndrome as well as he claimed then he would know that research into this disease is in its infancy and that there is a lot we don't know, particularly in how it manifests and how symptoms of one type can overlap with another. He is also making the assumption that I was correctly diagnosed in the first place. Being the expert he claims to be, he should know that there is no current clinical test for EDS and diagnosis is based solely on observation and family history.

I was formally diagnosed in 2014 and categorised as HEDS based on what I knew at the time. Since then, as I have learnt more about EDS, my family history (my maternal grandfather being a complete unknown), seen deterioration in my skin, and recent developments, I have come to question whether I might actually have VEDS albeit a milder form, or a combination of the two. Considering that the experts at the leading edge of EDS research are still mystified on how which genetic markers produce which outcomes, it astounds me that Dr It’s-Just-Reflux could have such a cavalier attitude.

His ignorant dismissive manner was not only biased, misogynistic and patronising, it was also extremely dangerous. Luckily protocol was to continue observation otherwise I believe he would have sent me home.

Early Sunday morning when the nurse came to do my obs I had fallen into such deep sleep that when she roused me I woke with such a start, I shuddered and gasped. Fifteen minutes later I started to feel very queasy and sipped some water which immediately came back up again. Fearing that if I said anything, Dr It’s-Just-Reflux would take the symptoms as further proof supporting his flippant theory, I said nothing for several minutes. The nausea grew in intensity and I eventually called a nurse when I felt I wanted to vomit. She gave me some Gaviscon and anti-nausea meds, which helped a bit, but within a few minutes of that, the chest discomfort I'd had on Friday returned, though not as intensely. Troponin testing a few hours later showed my levels had doubled and continued to rise.

I had angiography on Monday morning which confirmed that I had a Spontaneous Coronary Artery Dissection of the OM branch.

So, I would like to correct Dr It’s-Just-Reflux - heart attacks DO happen at night as well as during the day time, and Hypermobile Ehlers-Danlos DOES get dissections.

On behalf of my fellow EDS zebras I want this man to receive up-to-date training on EDS and a seminar on how women feel pain differently to men and that we are fully capable of analysing our pain and differentiating a niggle from something more serious.

With the exception of this one incident, my was a positive experience. All the staff who cared for me were caring, professional and friendly and treated with me respect and empathy. Something else the aforementioned doctor could brush up on.

With gratitude and kind regards
Skye Bothma

*There is a saying in medicine that has been taught to doctors for generations: 'if you hear hoofbeats think horses, not zebras'. It's to remind doctors that usually the simplest answer is right and they should not waste time and money running 'unnecessary' tests a fever is most likely just the flu than life-threatening meningitis, for example.

People, particularly those with EDS, call themselves zebras because our symptoms very rarely follow the typical 'horse' pattern.