I filmed my experience: https://www.youtube.com/watch?v=mX4qsfinWaI&t=1s
Living with invisible chronic illnesses for most of my life has been hard and it’s something I rarely ever talk about it. But considering October is Dysautonomia Awareness Month, and my phone and computer still don’t recognise ‘Dysautonomia’ as an actual word I think it’s about time I started the conversation.
In June, CNN published an article covering several patient’s journeys with POTS titled “A doctor said it was all in her head, but it was ‘the most common condition you’ve never heard of’” The article explains how most doctors aren’t even familiar with the condition — this is something I am not a stranger to: as I often have to explain my condition and medication to health professionals. The condition is seriously debilitating and left me bed bound at 18 years old — “research … show[ing] that the quality of life in POTS patients is similar in what is seen in congestive heart failure, or chronic obstructive pulmonary disease”.
I especially want to raise awareness as I started experiencing symptoms when I was in pre-school yet didn’t receive a diagnosis until I was 18 and bed bound. I suffer from both Postural Orthostatic Tachychardia Syndrome (POTS a form of dysautonomia) and Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome CFS/ME). Both conditions have no definitive ‘cure’ and limited treatment y
For as long as I can remember I always wanted long hair, but try as I might I could never grow it…then I got sick. I became so ill I spent weeks on end in bed. So naturally, I wasn’t well enough to have my hair cut and overtime it grew. Coping with chronic illness is difficult and at times I would wonder ‘why is this happening to me?’ and ‘how can anything good possibly come from this?!’ Then, one day I went to a doctor and he noticed I had ‘beau lines’ on my nails. These are lines that form because of severe illness and trauma resulting in the body stopping growth.
After a while I realised that my body had pretty much shut down growth, but I still had decent hair. I thought “maybe there is something I can do with this?” – so I researched donating my hair. Then began my hope. I decided to grow my hair as long as I could for the next 2 years and I’m now chopping it off in the hope it will make someone else who is struggling happy. My heart soars at the idea because when I was young I honestly dreamed of the day I would have long hair. Now the day has come and it means more to me than I could have ever imagined.
I have always made an effort to hide what I’m going through. One of the ways that I concealed how I felt, was by hiding behind my long hair. My long hair was a safety net that distracted people from signs I was struggling. I also saw it as a silver lining because it protected me from starting the conversation about illness: a conversation in which I would have to explain why I don’t work and I can’t go to university. I didn’t want to be pitied. Yes, I am sick, but I do make it through life happily. Becoming ill has been a blessing in many ways, it has taught me about the important things in life and how to find the positive in every situation.
But sometimes it takes time to find positives and hope. I was living through hell with my body but no one else could see it.Not even doctors. It was hard being told “nothing is wrong with you” – simply because my illness was invisible. All my life I was the ‘sick kid’, the one who was always away. I wasn’t diagnosed for years and I only found out about my illness because my mum demanded further tests after I became bed-bound in 2016. I became so sick I couldn’t walk alone in my house, I had to be fed and I couldn’t shower myself. These are things that isolate you and don’t ‘usually’ happen to an 18 year old girl. It was a long process, but through this time I learnt to accept life and what it throws at me.
Please remember to be kind, as everyone is fighting their own battles. And remember to find your own hope, it will keep you going to the very end. It isn’t always easy but find it, create it and cherish it – make it yours.
Thank you for reading this far, it means so much to me that you took time out of your day to do so.