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  • It’s complicated


‘How are you still alive?...’ A new doctors favourite words to say to me

As a child, I was always the one with regular colds and infections, visiting doctors with one problem or another (minor right!), spraining my ankle EVERY SINGLE MORNING just getting down from my bunk bed (doesn't everyone?). In year 6, age 10/11, I started suffering from shortness of breath and constant chest pain, and saw my gp on multiple occasions, who believed there was nothing wrong. One night, I ended up in the A&E due to the pain, where they diagnosed me with asthma and handed me inhalers. This was a surprise as they never actually conducted breathing tests.

Shortly after this, during pyjama day at school, I blacked out for the first time. When I fell, I hit my head on broken glass. Due to this, I was sent to a paediatrician and a child psychologist and was handed tablets as, apparently, 8 year old me was stressed. Fast forward to the age of 13, a day before I was supposed to fly out to India for a wedding, I had to visit the A&E due to an eye infection. Sadly, this didn’t end as for over 2 years I had back to back infections and had taken 20+ antibiotics, one after another, and had a surgery in Sweden when the infection started causing problems.

My parents and I spent years looking for answers as to what caused the ‘travelling’ infections, the fainting, and the breathing issues. What was supposed to be a 20-minute surgery, turned into me waking up 4 hours later, in the ICU. Turns out my heart couldn’t handle the anaesthesia, which no one realised before, as all my pre-op tests were fine. Shortly after starting sixth form, I decided to work at outfit as a retail assistant, which ended badly. After only 2 and a half months there, I caught a bad cold and cough which resulted in not being able to breathe very well and ended up in hospital in the resuscitation ward, spending a few days in and out on steroids (which reacted) and beta blockers.

Finally, after all those years, I was referred by a family friend (my GP just laughed at me and told me to see a therapist) to a private cardiologist, which was honestly the best thing to happen to me in a while. He conducted a few tests, including a heart rate monitor and breathing tests, which revealed I have low lung diffusion and inappropriate sinus tachycardia and suspected PoTS. As I was due to move to university, the cardiologist referred me to his respiratory colleague who started me on powder inhalers and steroids, as well as regular check-ups and lung function tests.

My respiratory specialist was the one to look after all my symptoms and refer me to the necessary consultants for check-ups, which is how I ended up with a neurologist for my regular tremors and was suspected to have POTS. He was amazing, purely because after one appointment he knew exactly what to do and who to send me to and that he was very sure it was autonomic related. He then sent me to his friend who is an autonomic consultant and worked in the same hospital.

For years, doctors told me it was ‘all in my head’, ‘you’re depressed and stressed’, ‘it’s just anxiety’. My Gp would laugh and say, ‘get over it there is nothing wrong with you’. Meeting with my rheumatologist, cardio, respiratory, neurovascular and autonomic specialists was life changing. They didn’t give up once and conducted all necessary tests because, for the first time in my life, someone believed me when I said I am not okay and that something is wrong. I was then diagnosed with Hypermobile spectrum disorder/Ehlers-Danlos syndrome, Fibromyalgia, autonomic dysfunction x3, IST, Eosinophilic Asthama , Endo, PFD, cystitis, MCAS, along with other co-morbidities. Since then I am seen regularly by 4 specialists with a total of 8 specialists (more pending) with regular testing and continuous treatment.

Hopefully I will reach my aim to raise awareness of chronic conditions as they are neglected the most unless it is very serious which doesn’t help anybody. I also really want to help others feel less alone and find answers about their health!


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