Discovering That I’m A Zebra Not A Horse | by Harry | Feb, 2024

Discovering That I’m A Zebra Not A Horse

As long as I can remember I have been in and out of the doctors. I have been called hysterical, a hypochondriac, hormonal, imagining it, “neurotic”, anxious, emotional… I have been humiliated, dismissed, ignored, misdiagnosed… By GPs, by specialists, by consultants… I have resigned myself to the pain, the fatigue, and the unstable joints. I have questioned and doubted myself and at times convinced myself that I was just overreacting like they told me I was. I have, in all honesty, partly lost faith in doctors who refuse to listen or acknowledge my concerns. I still have a resounding sense of guilt every time they send an ambulance, put me in a hospital bed, run another test for it to only come back clear. I have battled, argued, cried, pleaded, and sobbed to endless doctors and every time left exhausted and full of self-doubt. I can’t go through all my experiences because it would take thousands and thousands of words, but I bare all the scars, both physical and mental from my years of pain, illness and never being listened to. I was told for five years that there was nothing wrong with my knees and that I was simply imagining my kneecap moving. Imagining the agonizing pain and fear of when it would happen again. I was in and out of physio, had scans, saw specialists only to be told there was nothing they could do. I despaired at a body that was broken and doctors insisting that I was fixed. I told doctors for six months about debilitating headaches, horrendous pressure in my head and vision problems only to be told that it was just stress and just to relax and take painkillers. Then eventually when I could no longer bear it, I booked myself in for an eye test to find the optic nerves in my eyes were so swollen it was making it difficult for me to see. The optician referred me to the hospital and when the doctors finally examined me, they found the pressure around my brain measured 40mmhg, over twice of what it should have been. After six months of being told I was just stressed I find out it was actually all being caused by a build-up of fluid around my brain, and I was diagnosed with a rare brain condition called Idiopathic Intracranial Hypertension. I have suffered with chronic cystitis, sinus infections, dental problems, eczema, painful joints, headaches, digestive issues… I am no stranger to being ill, but I am a stranger to being believed.

After the carousel of doctor’s appointments and years of medical gaslighting I decided to pluck up the courage to book an appointment with a specialist who understands chronic and complex conditions. I prepared all my evidence, my research, I had read books and medical studies. I am, as a result of my past experiences, now a semi expert in chronic illness and have built an extensive knowledge which I have used to survive and get my body to this point. When I got there the private hospital waiting room was a far cry from the overcrowded, underfunded and under pressure waiting rooms of the NHS. There were soft comfy sofas, free refreshments, TV screens and the receptionists did not look over worked, over tired, or exasperated like I had seen at most hospitals. I did, and do, have massive sympathy for those working within the NHS, a broken system. It has broken the staff and it has broken me, the patient. In the waiting room of this new hospital, I prepared my arguments, evidence and points over and over in my head ready to reignite the trauma of the doctor’s office. They called my name, and I was ushered into see the doctor. What transpired over the next thirty minutes or so was a measured, open, receptive, and sympathetic conversation. It was like I poured out the last ten years of struggle and pain and finally someone was listening. The doctor examined me efficiently and effectively noting down my long fingers, stretchy skin, high arched palate, bendy wrists. They wrote down my history, experiences, and symptoms. At the end of the appointment, she told me that, I was in fact none of the things the doctors had told me I am, like an anxious hypochondriac, and instead I have hypermobile Ehlers Danlos Syndrome, a rare inherited condition that affects my connective tissue. It was finally an answer to why my body is like it is.

After the appointment I felt almost a bit numb. I was in such disbelief that someone had listened. It was somehow both a massive relief, the answer I had wanted for so long but also a feeling of overwhelming grief and sadness. The part that no one prepares you for when you finally get a diagnosis is that you go through a process of grieving. I knew I was sick so perhaps it shouldn’t have been such a surprise, but I guess I never realized quite how sick. Maybe because for so long I had no other choice but to hold myself together, pretend I was okay and minimize and downplay the ever-growing symptoms. The diagnosis has allowed me to let go, to realize just how hard it has been and to acknowledge the fact that I’m ill and I will never “get better”. My condition means the collagen in my body is faulty. It is the reason my knees, and other joints, frequently move out of place. It is also the reason I have the rare brain condition that, according to the National Organization for Rare Disorders, is thought to affect about 1 in 100,000 people. There is a phrase that those with rare conditions and those in the chronic illness community are familiar with. It is the phrase that doctors are taught during their medical training which is, “when you hear hooves, think horses not zebras”. Doctors learn to assume the simplest or most straightforward answer is the correct one. To look for common conditions instead of ones that are rare. The doctors are not looking for zebras and so those of us who are a zebra, who have rare conditions, spend years being told we are a horse. That alone causes trauma and distress.

Now I have a diagnosis, now I have been seen, suddenly it’s like the scars of being gaslit by medical professionals, the misdiagnoses which have worsened my condition, the self-doubt, the anxiety, the fight or flight response that is triggered whenever I enter the doctors or the hospital, the inescapable truth that I am chronically ill and will never recover, the reality that my life will have to adapt and amend to my disability, that my future might not look like the image I have held in my head for so long, the realization that some days I feel powerless over a condition that makes me feel helpless about my own body are impossible to ignore. We know how to grieve a death of a loved one or a friend, but no one talks about what it’s like to grieve your own body. But as chronically ill people we mourn the bodies and lives we once knew. We feel the frustration and anger we experience when we can no longer do things we used to love, and we fear the people who might leave when we tell them we will no longer be well. We feel a sense of loss for our former selves. There are things I have grieved like my ambition to be a professional dancer which I had to give up as a teenager. There are things I am grieving now. And there will still be things to grieve in the future when my body inevitably changes. A diagnosis has given me an answer, a sense of relief and has started to evaporate some of the self-doubt. But I am also holding space for the grief. Maybe now I can start to heal some of the damage that has been done. I can allow myself to feel the emotions that have erupted that I have spent so long trying to contain. Maybe I can wear my zebra stripes and help those who are zebras too.

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