To the doctor who misdiagnosed me.
Firstly, I would like to stress I do not blame you for the misdiagnosis. You are a human being doing what I imagine to be a difficult and demanding job. You make mistakes, just like we all do. You are unfortunate in the sense that your mistakes have far greater consequences than if I made a mistake in my menial office job. I have never been angry about the diagnosis. I have asked many doctors many questions and I vaguely understand how you reached the conclusion of a terminal diagnosis. I felt numb when you told me what was ‘wrong’ and that I had a limited time left; I never ever thought there could be a mistake.
After an historic car accident, I had fractured my skull in two places. Ever since that moment, I had struggled to regain any part of ‘me’. I had terrible headaches and migraines that would wipe me out for days. I would often be sick and couldn’t walk straight if I was tired. My brain was fighting to keep my body moving and repair at the same time. The doctors had warned me of all the potential physical effects of the accident. But no one told me about the mental ones. I lost a part of me in that accident. I started to get emotional over the smallest things; my memory would go at the most inconvenient times (imagine a 5-deep que at Asdas and I can’t remember my name let alone my pin number!). I would get frustrated at myself for not knowing things I thought I should know. Endless trips to the doctors and a few to A&E began when I started having seizures. I would black out and not know anything. I lost my driving licence and my freedom. There were many occasions when I thought it would be kinder to everyone around me, including myself, if I had just died in the accident. It feels selfish to say, but the pain of all the sudden changes was taking its toll. I was frightened of upsetting people and I would say sorry and worry about every decision, or text or phone call. Had I done something wrong? Had I upset my family or friends? I had these tendencies for other reasons, but I lost all sense of how to control them.
Two years on and I was able to work and reach a new level of ‘normality’, although I still wasn’t 100% me. Another bout of bad seizures had started and one night, my Husband had to perform CPR on me when I didn’t come out of a particularly bad episode. That night led to a referral to you- the head specialist. That fateful night led me to endless scans and ultimately, that diagnosis. I had a terminal illness and there was nothing that could be done. Another hospital reviewed my case, but as they used your scans and not fresh ones, they were only ever going to concur with your initial prognosis.
Months after this diagnosis- when my marriage had cracked under the final straw; when I had left my job and all my friends and family and moved to another country to live out what I thought to be my final months- an error in your scans was spotted. What should have been fantastic news, a second chance of life for me, was never passed on to me. Even though in our final consultation, I had told you my plans to emigrate and you had taken note of my new address? Why did you leave me there thinking death was around the corner?
I spent months in a foreign land, often tired and scared. I would wake up and be scared to go back to sleep encase that day was my final day. I tried to do everything I could in that time, desperate to leave my loved ones with memories of me living out a happy existence. I felt like I had been left marooned in a lonely sea, wave after wave of fear washing over me. Not every day was bad. I was fortunate to have amazing experiences, exploring new cities and meeting new people and wildlife. But every night would come and the darkness of the night would only empathise how dark I felt inside. I would cry at random moments, so scared of death and how it was closing in on me at an alarming rate and there was nothing I could do. The stress every day began to wear me down. I would retreat away from my new friends and explore the surroundings on my own, desperate to not bring them into my torturous world.
You did not assign me death. You assigned me to something that feels far worse.
My health was deteriorating and I put it down to the illness. I was tired; I was losing weight. Why would I go to a doctor and question what I already knew? I had been in Canada for 5 months when a crippling headache like one I had never experienced, hit me down one side of my head and face. It was a sharp pain that I have luckily never felt since. It felt like I had been hit by a rock. I remember falling and that was it.
I woke up in hospital 30 miles from where I had been. I couldn’t talk and moving my arms and legs was impossible. I would have cried; except I didn’t know how to. The first few days were blurry. Friends back in England were unbelievably kind and called me to check in on me. I felt alone and scared. The nurses and doctors were kind, but I wanted to be home. I had a stroke. I was still in my 20s. It was hard for me to comprehend what was happening. Multiple tests and a few weeks of daily rehab got me from shaky, wobbly movements and words, to be able to walk and talk, albeit slowly. I was then given a new diagnosis and news I never thought I would hear. My UK diagnosis was wrong. They understood why they had got it wrong, but new tests in Canada confirmed my death sentence was in fact never the case. I had an usually rare psychological nerve condition in my brain, but one that could be managed with medication and therapy.
I broke the news to my friends and family. I told my boss and when he got updated records of my medical history, for once he was speechless. I flew home not long after in a haze of relief and trepidation. I had got so used to the idea of death, that I wasn’t sure I knew how to live anymore. Suddenly, there was a huge expanse of time rolling out in front of me. Sometimes I was filled with excitement. I had a chance to make so many memories! To fall in love and maybe have kids like I always imagined I would. To have a good job and make amazing memories with the friends who had become like family to me. Other days, a terrible fear would paralyze me in the middle of the night. What if the first diagnosis was right and the ‘amended’ one was in fact wrong? I booked an appointment with a UK GP as soon as I could. He was kind and took me through everything. I really wasn’t dying. But in my mind, I had almost accepted that fact. I felt a terrible shame and guilt that I sometimes wished it had happened; just for it to all be over. I was too embarrassed to tell my friends how I felt. I made a terrible mistake in not telling them. Instead, I carried on with everyday life and tried to push all those feelings away. I got a job and I tried to tell myself everything would be okay. I was after all the lucky one who was in fact going to live.
Months of health issues of other varieties started to have me on edge. I would find it hard to concentrate and I would hate to be around to many people. I would often go and hide and do my paperwork on my own where no one could see me struggling. I was slowly disintegrating, mentally, but I didn’t know it. You assigned me mental torture. What did I do to deserve that?
Even to this day, I have moments when I cry because I feel like such a terrible burden to everyone around me. I have lost so many friends, colleagues and some family over all of this. Sometimes I imagine what I would be like to switch places and for someone else who deserves this life to have it instead of me. I have some of the most beautiful, sweet, kind souls in my life. I would be crushed to hurt them. Sometimes it feels like I’m hurting just to exist. I wish you could feel how I feel just for one day. To have these see saw emotions riddling me. To know that I can’t hurt the people I love and end it all, even though sometimes I hurt so badly inside that I wish something could just take it away. How many times I have wondered what my life would have been like without the accident and that diagnosis combined? I already had enough scars from life; these ones just seem to be cut down to my very soul.
I’m not sure what I would ask you if I ever met you again. I wonder if you are still practicing? Did anyone else get misdiagnosed? How many Worlds’ have been turned upside down? Yet, despite it all, I do not hate you. I am sure there was no malice in your decision. But I wish you could feel my pain just to know how tortured I feel every single day. The World is a truly beautiful, wonderous place. I wish I could see it more. The only reason I am still here today, is despite attempting to end it all, a dear friend never gave up on me. His kindness and faith in me has never faltered and I will be forever in his debt. I would probably be unable to write this to you now if it wasn’t for him.
Please be careful in your diagnosis’s. Please, from this, take an extra five minutes to be sure. Check the scans again. Or ask someone to check. Please, please I beg… don’t ever assign someone to this pain. Please let me be your last mistake.
