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In between the black and white: An Introduction from Alexandra Adams

What lies in between the black and white is a pun in its every sense; what’s even more convenient, is that, over these past few years, a period of life that saw my life dramatically change, I’ve learnt that Medicine and healthcare is still very much a ‘grey area’.

Alexandra Adams
Alexandra, wearing her medical student scrubs and stethoscope, whilst carrying her white cane and oxygen backpack.

My name is Alexandra Adams, and I am the UK’s first deafblind person training to be a Doctor. I am also a sufferer of the conditions Ehlers Danlos Syndrome (EDS), MCAS, PoTS, Gastroparesis, and respiratory muscle weakness, to name just a few. I am what you could call, a crossbreed of ‘medic’ and ‘zebra’.

Whilst in hospital, wearing all the zebra accessories; zebra tape, zebra hot water bottle, zebra drainage bag cover and tube pad, zebra bracelet, and cuddly toy zebra!

As a 4th year medical student, very much at a standstill up until now, My ‘EDS and co’ diagnoses came very late in my journey. Despite experiencing worsening symptoms over many years, a dramatic change in my body and in my identity, no thanks to illness, and 23 admissions to the Intensive Care Unit throughout the course of my medical studies, I remained very much in that grey area of support until very recently. And the kind of responses I received from other healthcare professionals, my colleagues, surprised me. What followed was a 17-month hospital admission, in which I was bedbound, malnourished, unable to eat, move, or walk, taken prisoner by multiple surgeries, 7 bouts of sepsis, and catching COVID-19 too. Still, I couldn’t really tell you when I realised that life had really changed forever.

After a very turbulent time, I announced to those following my story, just this past week, that I was finally returning to medical school to complete my Doctor dream, after the longest hiatus, of 2 years and 2 months, in my health journey. It has meant going back 2 years in my degree, when I could’ve already qualified with the rest of my original cohort at the height of the pandemic, but I am just grateful, thankful, and ever so relieved, that I have been given this second chance to pursue my goals and passions, despite everything – all things Medicine. I guess it comes with the very obvious message of ‘not giving up’, persevering, and believing in yourself and in your worth and capabilities, even through the very hardest of times. Without doubt, there were countless times when I really thought I was nearing the end, that I couldn’t ever get back to what I once was and once did, that I would have to give up Medicine altogether, and that eventually I would succumb to my ill health when things really were, with the multiple peri-arrests and ICU admissions, ‘touch and go’.

But what kept me going? It wasn’t just the self-belief and the selfish want to continue my own journey – it was also everything that I learnt as a patient whilst in that hospital bed that made me realise, I can’t leave healthcare the way it is, when it’s in this state for other patients’. I was learning more about becoming a Doctor, by being a patient, than any medical lecture or textbook had taught me. I had been misdiagnosed, gaslit, neglected, and on the receiving end of poor patient care – all because I had a rare genetic condition that (still) isn’t in the textbook, or taught in Medical School.

Of course, that’s not to say that I didn’t also have wonderful care from others. It was the conversations I had with these healthcare professionals; the ones who listened and understood somewhat, that I realised, if there could be any outcome I’d wish from all of this, it would be that the education and awareness of conditions such as EDS, is broadcasted and developed as a standard measure for all those in the healthcare profession. Because I cannot bear to hear of another patient, like myself, being let down in the same way that I was.

Being both a medical student training to be a Doctor, and a patient, who has experienced every end of the spectrum from the hospital bed, I am passionate in not only sharing my story, and journey, but also my ideas and perspectives in how we can strengthen these lesser-known areas of healthcare. Hence, it is my aim, as a soon-to-be regular contributor of ‘Article999’, to explore a variety of topics concerning the above, that perhaps many of us have otherwise not considered before.

Alongside my commitments and hobbies in blogging, patient advocacy, and healthcare leadership, I also enjoy my roles as a public speaker (including a TED talk for TEDxNHS in 2019), social media influencer (account handles at the bottom of this article), amateur cook and houseplant Mum, piano-player, and ex-GB athlete. I hope that, through my future articles and blog-posts, you’ll be able to learn even more about me, and that I can network with many of you, too.

Alexandra speaking at TEDxNHS 2019

This is just a short one for now, but I’m very excited to come on board ‘Article999’ to share my story, journey, and experiences, and I look forward to welcoming you to this page, where I hope it can help educate you, support you, and provide you with the resources to help implement changes to improve health, and care.

Alexandra Adams
Instagram: @alexandraelaineadams
Twitter: @alexandra_DBmed
TikTok: @alexandraelaineadams

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