Pots syndrome stories: Susie and her invisible illness

Pots syndrome stories: Susie and her invisible illness

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 it. But considering last October was Dysautonomia Awareness Month, and my phone and computer still doesn’t recognize ‘dysautonomia’ as an actual word, I think it’s about time I started talking about it. 

It was all in her head

In June 2018, 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 what POTS is – a malfunction of the autonomic nervous system (Postural Orthostatic Tachycardia Syndrome) – and how most doctors aren’t even familiar with the condition. This is despite the fact POTS affects an estimated 1 to 3 million Americans. 

When I first read this article 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 symptoms when I was in pre-school yet didn’t receive a diagnosis until I was 18 and bed bound. Today I still suffer from POTS – a form of dysautonomia – and Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome CFS/ME). Both of my conditions have no definitive ‘cure’ and limited treatment options.

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 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 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.”

Read more: Living with POTS and JHS: what is it like?

Was I subjected to healthcare gaslighting?

Today I still wonder if I was not subjected to healthcare gaslighting: “the manipulation of a person by healthcare professionals forcing them to question their thoughts, memories, and the events associated with how they physically or mentally feel.”

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 bed-bound, 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 POTS syndrome stories to raise awareness of this illness as long as I can.

My hair was my safety net

Sometimes it takes time to find positives and hope in a chronic illness. 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.

Caption:

I am donating my hair so I can make someone else happy

Credit:

Susie Ray

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 lines’ on my nails. These are lines that form because of severe illness and trauma resulting in the body stopping growth. 

I realized 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 when I researched about donating my hair. Then began my hope.

I decided to grow my hair as long as I could for the next two years with the intention of donating it. In November 2018 the two-years will be up, which is why I’m now chopping it off in the hope it will make someone else who is struggling happy, as well as raise awareness of invisible illnesses.

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, 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. And if this means losing my hair for a cause, all the better.

PS. Please remember to be kind, as everyone is fighting their own battles.