Tell us about yourself
Hi! My name is Alexandra Adams and I am best known as the UK’s first deafblind person training to be a Doctor. I am currently based in Cardiff, where I attend medical school, although I am also Welsh-born, so it’s nice to be back in the ‘homeland’! Otherwise, my family home is back in Kent, where I have spent the majority of the last 2.5 years, whilst I took an interruption of study from Medicine, during of which I spent 17 long months bedridden in hospital as a patient. It was a particularly horrendous time, undergoing multiple surgeries, contracting sepsis 8 times, ending up in ICU, and getting COVID-19 too, but I am so happy and relieved to have finally made it back to medical school, where I am now restarting my placements and preparing for exams – it goes to show that things do get better, and that your dreams can come true, when time and optimism is on your side!
Aside Medicine, I spend a lot of my time advocating for better education and inclusivity of the disabled and chronically-ill community; it’s something I’ve always been particularly passionate about, especially as I’ve experienced the negative sides to this in society, as a person with multiple disabilities and chronic illnesses myself. Outside of my medical training, I am also a public speaker, TED talker, first responder for the Ambulance Service, blogger, writer (currently writing a memoir on being the UK’s first deafblind soon-to-be Doctor, and how my experience of being a patient has influenced my future practice), ex-GB athlete in two different sports, and content creator too, where I aim to dispel the myths and misconceptions behind certain disability stereotypes, over on Instagram and TikTok. I enjoy playing the piano, writing, drawing, looking after my houseplants, going for long countryside walks with my little Cavapoo, Winnie, and sitting in cosy cafes drinking copious amounts of coffee (it’s a medic thing!). Ultimately, I’d like to end up specialising as a Doctor in either Palliative Medicine, or Genetics and Rare Diseases.
Can you tell us what it’s like living with a rare disease and what challenges you’ve had to face and overcome
Ahh. Such a great, but broad question – and one that I’m sure anybody with a rare disease will be able to relate to. An honest insight? – living with a rare disease can be unpredictable, inconvenient, surprising, daunting, and, more unsurprisingly, devastating at times – for both the person themselves, but also their entire social circle; friends, family, colleagues, too. But, as it says in the name, a rare disease is very unique, making the person with that rare disease also unique – unique in the life experiences they end up having, their relationships, their circumstances, their goals.
Having a rare disease is a different experience and meaning for everyone, and, because of so little focus and research on many rare diseases (as I can confirm from my ‘medic hat’), it also means that many of us are still left misunderstood, neglected, and isolated at times too. Personally, coming to terms with my own rare conditions has become a gift, because it has equipped me with unique insight, empathy, strength, and compassion – something that not many people possess, and I just hope that my experiences as a rare disease patient, both good and bad, can help make me be a better Doctor in my future career.
Despite being deafblind from birth, and having a few other health conditions from a young age, my rare diseases (undiagnosed at the time) never really affected me to the extent that it impacted my day to day life; not until I started university and my admissions to the Intensive Care Unit, ending up on life support, became more frequent. I used to be really athletic and was training towards Paralympic qualification in two different sports, but then I had to stop competing and training as my health declined and I became less able to do simple everyday tasks like getting dressed and showering, without getting tired or out of breath. Very quickly, I began missing out on huge life milestones, opportunities, having constant interruptions to life and losing friendships and hobbies. It got to the point where I was spending more time living in hospital as a patient than anywhere else (rather than working there!), and yet, nobody really knew what to do with me, so I’d either be pigeon-holed, gaslit, or simply left to get on with these progressive symptoms alone.
And then there was that long 17 month hospital admission, which changed my whole life massively. So yes, I do look back and realise that I have had a lot to contend with and overcome, and that, no matter how positive and optimistic I tried being most of the time, there were moments when I concluded that “life really is difficult with a rare condition”; I faced the very real possibility of never being able to return to medical school to follow my dream Doctor career, I had to have hard conversations with family when things got so bad and ended up going to ICU, never quite knowing which way everything would go. Then there’s the impact this all has on our mental health, which nobody really ever talks about – nowhere near enough, anyway.
But, beyond all that, I still come back to the conclusion that it has made me a better and stronger person than ever before, nonetheless. I am now back at medical school and so happy and relieved to have had a third chance at my life goals. I see patients and carry out procedures, examinations, histories – all with my oxygen tank that I’m on 24/7, feeding tubes and drainage bags. Having a rare condition has moulded me (somewhat stubbornly at times) into a far more adaptive, flexible, innovative, and empathic person, and for that, I do believe my struggles and illnesses have given me the greatest gift and life skills I could ever have and wish for.
Are there any resources or recommendations for anyone else who is in a similar spot?
The biggest thing I would say to anyone else navigating a rare disease is, ‘take the time to learn about yourself first’. It’s easy to get caught up in grieving for the old versions of ourselves, the ‘pre-illness versions’. But please be reassured and comforted by the fact that there is still hope and light at the end of it, regardless of diagnosis, limitations, or new capabilities. It takes a long time to understand our ‘new bodies’ and much of it is about trial and error. But something I realised along my own journey was that there is a whole community out there, ready and waiting to support you. There is so much talk on how social media can be a toxic place, but it can also be an incredibly supportive and healing place too, because it connects many communities of people who are going through similar struggles – it is through these networks that I have found friends for life, the people who just ‘get it’, and the people who can share tips and advice on how to cope with the burdens and downsides of our rare conditions when life gets particularly tough.
As someone who is also in the medical profession, I would encourage others with their own journeys and stories to keep speaking up and out about their rare disease experiences – because the more we talk about it, the more the medical profession will have an angle to reflect from, and hopefully then to invest more time and research in making the rare disease pathways better for so many future patients! (Medic 4 Rare Diseases – M4RD, are a great resource for this!).
When did you first hear about YUYU and what do you think about it?
I first heard about YUYU from some fellow social media friends who I had got to know through the chronic illness community. I was in the midst of my long 17 month hospital admission at the time, and it was of great comfort and inspiration to come across such a wonderful brand and company that caters especially for those with chronic illnesses and disabilities in mind. YUYU and I ended up connecting and they gifted me the most beautiful zebra-themed hot water bottle, which kept me warm and comfortable during my long, often painful, hospital stay where I was completely bedridden. It also came at the very time I received my official rare disease diagnoses, and with the zebra being the symbol and ‘mascot’ for ‘rare’ patients, it made me feel so much more reassured and comfortable in my new ‘stripy’ skin! Thanks again YUYU ;)
Is there anything else you’d like to share with our readers?
Just to say a huge thank you to YUYU for all that you do, and for my latest beautiful Clay Waffle hot water bottle – for anybody else who suffers from sore joints that are worsened by the cold, I highly recommend getting yourself a YUYU long hot water bottle to help ease the pain and stiffness on the especially cold days, particularly through this energy crisis too! (and they look gorgeous too!). If you’d like to follow my journey, whether that be on all things Medicine and medical school, or disability and chronic illness, you can find me on social media channels Instagram and TikTok @alexandraelaineadams, where you’ll also find the links to my other pages and blog-site in the bio.
Thank you for reading!