Originally published on 5 November 2019. Susie’s account describes her life at the time she wrote it; it is not an update on her current health.
Growing up as “the sick kid” with an invisible illness for most of my life has been hard. It is something I rarely ever talk about. But considering October is Dysautonomia Awareness Month, and my phone and computer still don’t recognize ‘dysautonomia’ as an actual word, I think it’s about time I started talking about it.
When POTS symptoms were dismissed
In June 2018, CNN published an article covering several patients’ experiences 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 discussed postural orthostatic tachycardia syndrome (POTS) and the difficulty some patients faced getting a diagnosis.
When I first read this article about POTS it totally resonated with me as it is something I am no stranger to. Like Tori Foles in the article (the wife of Super Bowl MVP Nick Foles), I was young when the condition struck me, and it took years for me to be diagnosed.
I started experiencing POTS symptoms when I was in preschool yet didn’t receive a diagnosis until I was 18 and bedbound. Today I still suffer from POTS – a form of dysautonomia – and Myalgic Encephalomyelitis (ME/CFS).
The sick kid with an invisible illness
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 bedbound 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 to recover from, but through this time I learned to accept life and what it throws at me.
Although looking back on my childhood I still don’t fully understand why my doctors kept saying to me: “nothing is wrong with you.” Being dismissed and gaslit by doctors is at the core of my story.
Was I subjected to healthcare gaslighting?
Today I still wonder whether I was subjected to medical gaslighting.
How might my childhood have been different if I had been correctly diagnosed years earlier? If only the doctors had stopped saying “nothing is wrong with you” and actually believed me? If only the doctors were more aware of POTS and CFS/ME?
As I only received actual help and a diagnosis after becoming bedbound, I often wondered ‘did it ever have to get this bad?’
I once asked my specialist, if I had earlier intervention could this horrible state have been avoided? And his response was “most likely, yes.”
This is why I intend to keep telling my story to raise awareness of this illness as long as I can.
My hair was my safety net that helped me through POTS
Sometimes it takes time to find positives and hope with POTS and other invisible chronic illnesses. For me, it was my hair.
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 in bed. So naturally, I wasn’t well enough to have my hair cut and over time it grew. And it grew.
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.
Coping with a 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’s lines on my nails. These are grooves across the nails that can form when illness, injury or severe stress interrupts nail growth.
It felt as though my body had pretty much shut down, but remarkably I still had decent hair. So I thought to myself, “maybe there is something I can do with this?” This was when I started researching how to donate my hair. Then began my hope.
I decided to grow my hair as long as I could for two years with the intention of donating it. In November 2018 the two years were up, which is why I chopped off my hair in the hope it will make someone else who is struggling happy, as well as raise awareness of invisible illnesses and POTS.
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 didn’t want to be pitied. Yes, I am sick. Yes, I have POTS, 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.
Please remember to be kind, as everyone is fighting their own battles.
