I was an active child. Despite being deafblind, I was happy, healthy and never let things get in the way of life. In my teens, I was on the GB Swimming Team and later, GB Parasnowsport Team, training for 2 Paralympics; but 1 year in hospital, 20 stomach surgeries, PEG and Jej in between changed things. When I started medical school, my health declined. I‘d already had a lot to deal with. Nobody thought I’d get this far, but I’m now the UK’s 1st deafblind person training to be a Doctor, set to qualify in 1 year.
But then I started sleeping all the time. I had seizures, arrhythmias, blackouts. I’ve had 20 admissions to ICU too, due to respiratory arrests and metabolic crashes. In 2017, I was in for months; paralysis, severe muscle wasting, constantly vomiting. I lost so much weight I kept collapsing. I became someone different, someone completely unrecognisable. But I carried on. I travelled the world solo, went around the U.K. giving talks, did radio, podcasts, TV. I did my first TED talk in 2019 and in early March 2020, just before lockdown, I spoke in front of 16,000 people on the stage of Wembley Arena. Nobody, except me, knew what was going on behind the brave face.
It wasn’t til lockdown that things got really bad. I spent all day with my head in the toilet, electrolyte levels haywire, breathless and dizzy every time I moved. By August 2020 that was it. I collapsed. And I’ve been in the hospital ever since. I’ve now been diagnosed with EDS, PoTS, gastroparesis and bowel dysmotility. I‘m bedbound and have multiple hip dislocations a day. In November, my bladder also gave up so I have a catheter in. I’ve been told it’s permanent, but no doctors here are familiar with EDS so I’ve been ‘left in the dark’. I’m fed TPN, by a line in my chest, and am waiting for a venting PEG to help drain my stomach and reduce sickness.
The EDS support here has been non-existent. I often feel alone, scared and frustrated, but at the same time I’m learning more about how NOT to be a Doctor for future! The chronic illness community has been great though – I’ve learnt so much from new friends I’ve made. There’s something about having common ground with the lived experiences we have.
I aim to return to Medicine in September. I’m an advocate for people who want to achieve their dreams, regardless of disability or chronic illness. Until then, I’ll be transferred to another hospital after being here for 8 months, so this could be the turning point I really need. Either way, I‘m proud of all I’ve overcome, despite there being lots more challenges to face, knowing that not every day will be a good day. I recently finished writing my book, ‘In the Face of it All’, a memoir about being a disabled medic, forever crossing the line between ‘Doctor’ and ‘Patient’. I won’t allow my illnesses to define me, but they have shaped me into who I am today, and the life experiences it’s give me are ones I’ll treasure forever.