Zoe Bacon lives with two rare diseases, mixed connective tissue disease (MCTD) and Fowlers Syndrome, and she has learnt the importance of "taking control" of her own health needs and the power of being heard
I think that some people forget, yes, I do have a rare disease, but to me it is not rare, it’s normal. I often find myself teaching medical professionals about my conditions, when really it should be the other way round.
It has always seemed like there are so many components to my health and it was initially so difficult to piece them together. I was described as a medical mystery; my symptoms just never seemed to fit one straight-forward diagnosis meaning I was misdiagnosed a lot. Some doctors even began to think I was making it all up. Luckily, I had a brilliant care team who never gave up until I had a diagnosis and treatment plan.
Alongside some other health conditions, I have a rare autoimmune condition called mixed connective tissue disease (MCTD). It combines features of systemic lupus erythematosus, scleroderma, polymyositis and rheumatoid arthritis. There are many ways that it can affect different people. My symptoms are unpredictable and vary massively each day. This can make it difficult to manage, as I never know when my symptoms are going to flare. Typically, flares come at very inconvenient times! There is no cure, so we just have to treat my symptoms as they appear and make sure that I am comfortable and am able to keep doing the things I love like sport and playing piano.
I also have a rare condition called Fowlers Syndrome, which affects my bladder. My bladder muscles are in a constant spasm, meaning I have to self-catheterise as I can’t wee naturally. My team are currently looking into a more long-term solution. I can hold over a litre in my bladder without needing a wee. I have found that there is a lot of stigma around using a catheter which massively knocks my confidence, but it’s important to talk about so that other young people in a similar position know they are not alone. Whilst I hate having to use a catheter, it gives me independence and it is very discrete, so no-one has to know.
All my illnesses are invisible, but they affect every part of my life. There have been many times where people have told me I can’t do something because of my health. Doctors told me I would never cope at university and once I got there, I was told to drop out; all because my health was “too complex”.
Of course, it has had its challenges, but this summer I am graduating from a Medical Engineering degree, and in September I am starting a Masters degree. Sometimes you have to be stubborn because you know your body the best, and ultimately, you should have the same opportunities as everyone else.
I think it is so important for young people with rare diseases to feel like they are in control. For me, control involves understanding what is going on with my health and care plans. I ask doctors ridiculous amounts of questions, try and speak to people with similar experiences to me and research my conditions. I found that there is not a lot of information about my rare diseases online, making it hard for me to process what is going on.
My conditions are progressive which is scary, but by taking control, I am learning to accept what might happen.
I try and learn as much as I can about my rare diseases to ensure I can best manage my symptoms. I also try to look at the positives that my illnesses have brought including the amazing friends I have made through hospital. Sometimes I think doctors can view you as just another number or tick in the box, but it is so important to remember that you are a person with so much more than what is written in your medical notes.
As well as countless medications, treatments and surgeries, I have learnt to coped with my health conditions through various patient experience roles. I am a governor at Great Ormond Street Hospital, London where I was treated at a teenager. I represent patient views and it’s nice to give something back to the hospital and influence the way the hospital works. I am also on the patient advisory board for the EU iPSpine project and an experience of care partner with the NHS leadership academy. I find these roles help me speak about my health and enable me educate others about chronic illness and the affect that these can have on young people.
Written by Zoe Bacon
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