‘The doctor said, ‘We don’t know why it happened but it’ll never happen again.’ He made a very big mistake.’: Amputee fights unknown illness

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“Everyone wants to feel special right? Or unique? Well hate to toot my own horn but I’ve been called that many a time, just not for the right reasons. In fact, I’d give my left leg not to be those things… Oh wait, maybe not. Confused? Don’t worry, you along with several other doctors. Let’s rewind about 8 years, 2012 to be precise.

My name’s Charlotte and back in the good ol’ days, I was a competitive dancer in Latin American, ballroom, and freestyle. Nothing made me feel more alive. I had dreams of being on the stage and screen. In my mind, I was going to be in London at drama school that next school year, auditions were just around the corner. I’d never previously been sick, well not seriously, a day in my life… You can sorta guess where this is going.

Day 0: I woke up feeling just generally under the weather so I took the day off school and stayed in bed. That evening, a strange golf ball-sized lump appeared on my hip. I hadn’t knocked it so I went to bed thinking I’d just see how it was in the morning. 12 a.m., I woke up sobbing in pain and looked down to see a deep burgundy swelling spreading across my stomach and around my back. I couldn’t move my torso, there was so much swelling.

bruising on hip and stomach area
Courtesy of Charlotte Evans

I was rushed to the hospital by ambulance for worry of internal bleeding. 3 weeks, I would stay there with no answers as to what had happened to me, and the doctor who discharged me uttered the words, ‘We don’t know what or why it happened but I can confidently say it will never happen again.’ He made a very big mistake that day.

This would go on to happen several more times, in every part of my body, each time more aggressive than the last. These extreme swellings when in my extremities would cause a condition called acute compartment syndrome normally associated with very severe bone crush injuries. For me, it was completely spontaneous! To date, age 20, I have had 68 operations, experienced leg paralysis for 2 months, frequently vomited blood, coughed blood, recurring pancreatitis, and had stomach swellings so big I’ve been asked when I was due! All from a condition that no doctor can identify, and this would, over the years, cause me a lot of trouble.

girl with bruising on arm
Courtesy of Charlotte Evans

Worse than any pain or medical procedure is not being believed. I’ve battled harder against doctors and nurses to be taken seriously and receive proper care than my condition itself. Discrimination of those with rare and undiagnosed conditions is a serious and preventable issue. We need the mentality instilled in medical professionals that it’s okay to not know exactly why things are happening. Medicine is constantly evolving, look where we were 50 years ago, but these patients still must be cared for the same as anyone else and reassured they are believed.

My time in pediatrics was particularly traumatic for me mentally, and the consequences of that still have an effect on me today. I was emotionally and verbally abused at one of the most vulnerable stages of my life by the people I and my parents trusted to care for me the most.

Now before, I start I’m not saying all medical professionals, there are many incredible ones who I’ve been fortunate and blessed to be cared for by, so this is by no means targeted at all. However, I have encountered more than enough negative behaviors to make this a problem and I believe, I know, there are many out there struggling like me with this issue. If I can get anything out of this, it would be for this to reach those out there and know they’re not alone because that kind of isolation can at times feel unbearable.

Around the 6/12 month point suffering the wrath of this condition with no answers appearing, negative test after negative test this became a breeding ground for ‘Doctor Pride.’ This is a term I created and by that I mean, when certain doctors and surgeons can’t explain or provide an answer as to what’s wrong but, rather than just sucking up their pride and admitting that, which there’s nothing wrong with, they start deflecting it onto you and it becomes the patient’s fault. I started to not be believed despite extreme visible physical symptoms, it was a psychological problem, self-inflicted, even though it had been proven otherwise.

woman sitting on bed
Courtesy of Charlotte Evans

But once the seed was planted, it spread like the plague between those looking after me. I was being refused treatment, turned away from the hospital even. They would flat out refuse to look at the affected area, as I uncovered it to show them they’d physically turn their backs to me. The nerve damage I have suffered as a result of this will stay with me for the rest of my life. As an inpatient, I had experiences where if I cried or asked for pain relief I would be told to ‘shut up’ and I was ‘disturbing patients who were genuinely sick.’ I wouldn’t cry for nearly 7 years because I associated such shame with it.

Having to suffer all the symptoms of a serious health condition while being told there’s nothing wrong with you and treated like a burden is demoralizing. It’s hard enough having to fight this illness without having to fight to be believed as well. Watching every other patient in that bay be treated with gentle care and respect made my heart pang. I would have settled just for human decency if nothing else. It has still left me with a lot of trust issues with medical professionals, but thankfully, at 16, things had reached a breaking point and I was able to be transferred to adult care. It was from here my quality of life changed dramatically.

As soon as I started receiving adult care, the whole vibe changed. I was believed! Through this, they were able to open their mind disregarding the barrier of having a diagnosis and focusing more on what treatments may be effective for me. After 4 years of doctors refusing to try any treatments and instead just operating on me repeatedly every 2 weeks, I was trialed on platelet transfusions. I received them every 5 days continuously for 2 years. They changed my life. Although not by any means cured, I had a glimpse of what it was like to be somewhat healthy again.

woman smiling
Courtesy of Charlotte Evans

The treatment was intense. I lost 73 days, nearly 2.5 months out of each year to lying in a hospital bed for hours on end listening to the clicking of a transfusion pump but I didn’t care, it worked. Trouble was, this wasn’t my happily ever after. Platelets, if you have them enough, let alone as regular as I was, your body develops antibodies so eventually they will no longer work. We had no idea when this day would come so it was a race against time to find me an alternative and hopefully more permanent treatment option.

Unfortunately, that clock ran out. In March of 2019, the episodes returned more aggressive than ever. I had to watch the life I started to rebuild over those 2 years slip through my fingers. One of the most agonizing things about having any kind of a long-term illness is the feeling of letting people down, because if you do it enough eventually they stop asking, you become forgotten. I worked so hard on my education, taking my GCSEs in hospital less than 12 hours after surgery on a morphine pump to get into college, only to have it come crashing down.

woman in hospital bed
Courtesy of Charlotte Evans

The strength and stamina I had rebuilt I felt draining from me. Over 18 months, I had 18 surgeries and I felt the most fragile I had ever been. I hadn’t felt scared of my condition since the first couple of episodes I had all those years ago, but I started to feel scared, and I wasn’t alone in that. There was a lot of crazy stuff that happened between March 2019 and November 2020, I could be here forever, so I’m gonna skip to where sh*t really hit the fan.

November 7th, 4 days before my 20th birthday, the unimaginable happened. I was rushed in for an emergency amputation of my left leg. Despite everything I had gone through, I never in a million years thought it would happen to me. This would be my 68th operation. Prior to being rushed in, my leg had swollen to the point it had torn open and blood vessels were bursting. I had to have a washbasin held under my leg because it poured out like a tap. I had to watch a student nurse gag whilst trying to hold it together myself. There was a 50/50 chance if they’d save my knee. A standard amputation only takes an hour and a half. My surgery was 5 hours long, but my knee was saved.

woman with severe bruising in her leg
Courtesy of Charlotte Evans

So where am now? Well, it was revealed to me almost 3 whole months prior to losing my leg, a trial drug that was readily approved and funded for me to try had been sitting in the hospital waiting for me, but due to ‘communication issues’ had been delayed in being given to me. However all of a sudden, conveniently the day after losing my leg, I was able to get my hands on it. Unfortunately, my entire health journey has been me saying something’s wrong but nobody doing anything until things get really really bad. I’ve now been on it for 6 months and I’m very happy to say that, touch wood, so far I have had no further episodes.

woman with lower part of left leg amputated in hospital bed
Courtesy of Charlotte Evans

I genuinely got to the point where I never thought this day would come and one day this illness will beat me, but not today! I’d be lying if I said initially I wasn’t angry and frustrated there was a good chance the loss of my leg could have been prevented, but I realized thinking like that would just eat me up and ruin the miracle I’ve been given. And you know what, for the leg I lost, I gained an awful lot back. They say it takes something tragic to happen for you to realize what you are blessed with. I push and challenge myself in ways I never did before, anything I can’t do I want to work at till I can. Things I always wanted to try and said ‘I would do’ are no longer just words. I have had to learn to pace myself and not go full throttle.

Life as an amputee can be very exhausting, getting ready in the morning can feel like a workout, but actually, I can see those glimmers of happiness and excitement I hadn’t felt for a very long time in my life. I’ve had to take on an awful lot of emotional growth and face demons and trauma I pushed down deep for years that rose to the surface from my amputation. I felt a lot of anger towards all those who didn’t believe me and abused me and felt like standing in front of them and saying, ‘Do you believe me now?!’ I’ve got to the point where I refuse to let them rule my life anymore and dictate the person I become, they don’t deserve the satisfaction.”

woman with amputated leg doing aerial arts
Courtesy of Charlotte Evans

This story was submitted to Love What Matters by Charlotte Evans from Cornwall, UK. You can follow her journey on Instagram and Facebook. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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