Doctors Can Be Patients Too

Alexandra's Story

Cardiff, Wales

Age: 25-36

A little bit about my journey:

My Diagnosis

EDS, PoTS, cardiovascular instabilities, gastroparesis, intestinal failure, bowel dysmotility, anaemia, mitochondrial myopathy, renal agenesis, brittle asthma, congenital deafblindness

Time to Get Diagnosed

Far too long! (Many years) and I am still undergoing investigations for more

Year I was Diagnosed

2011 a gastroparesis and bowel dysmotility, November 2020 - EDS and PoTS

Sending Love to

Dr. Philip Bull

Hospital I'd Recommend

I’ve had bad experiences in my hospitals

This is my story:

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.

Let’s play 20 questions:

The song that keeps me going is:
Warrior, by Clare Bowen
I never leave home without my:
Long white cane
My go-to feel better movie is: 
Mamma Mia
If I was in the hospital, the celebrity I would most love to visit me would be:
Pixie Lott
When I need to relax, I:
Play the piano
My favorite food is:
Sushi
The quote that keeps me going is:
It is better to try, and fail, than fail to try
When I need a laugh, I:
FaceTime my sister. She always cheers me up (even if she’s grumpy!)
Meet my pets (or favorite stuffed animal):
(My family are getting our first ever puppy this year, so watch this space!)
My hero is:
My Mum
When I’m having a down day I binge watch:
Come Dine With Me
My favorite book to get lost in is:
My own! (I’ve just finished writing my first book, a memoir, and am just working on the final edits before sending it out to get published!)
I want to be best friends with:
Dr Alex George
The thing I’m most proud of:
Always believing in myself, when others haven’t. When people have told me not to do things yet I do them anyway - and succeed
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Being the UK’s first deafblind person training to be a Doctor
The most hilarious thing that has happened to me is:
Too many hilarious things have happened to me - I’m a real-life Bridget Jones. Read my book and you’ll find out!
It really means a lot when someone does this:
They treat me in the same way that they want to be treated
My favorite social media account to follow is:
Stacey Solomon - her bubbliness and positivity NEVER fails to make me smile
The advice I would give to myself back at the beginning of this journey would be:
Put yourself first a bit more. You can’t help refuel others if you don’t have the energy yourself
Words of encouragement that I’d give to my fellow warriors are
Both the good and the bad days make up your life experience - that life experience is something you can forever learn from, embrace, use to help others and be proud of. Your life experience is your superpower
Follow my journey: https://setting-sights.blog

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