Pots syndrome stories: Susie and her invisible illness
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POTS syndrome stories: for years doctors told Susie there was nothing with her. Bedridden in 2016 she was finally diagnosed with POTS.

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Pots syndrome stories: Susie and her invisible illness
Growing up as βthe sick kidβ 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 doesnβt recognize βdysautonomiaβΒ as an actual word,Β I think itβs about time I started talking about it.Β
It was all in her head
In June 2018,Β CNNΒ published an article covering several patientβs journeys with POTS titled: βA doctor said it was all in her head, but it was βthe most common condition youβve never heard ofβ.β The article explains what POTS is βΒ a malfunction of the autonomic nervous system (Postural Orthostatic Tachycardia Syndrome) β and howΒ most doctors arenβt even familiar with the condition. This is despiteΒ the fact POTS affectsΒ anΒ estimatedΒ 1 to 3 million Americans.Β
When I first read this article itΒ totally resonated with me as it is something I am no stranger to. LikeΒ Tori Foles in the article (the wife ofΒ Super Bowl MVP Nick Foles), I wasΒ young when the condition struck me, and it took years for me to be diagnosed. Β
I started experiencing symptoms when I was in pre-school yet didnβt receive a diagnosis until I was 18 and bed bound. Today I still suffer from POTS β a form of dysautonomia β andΒ Myalgic EncephalomyelitisΒ (also known as Chronic Fatigue Syndrome CFS/ME). Both of my conditions have no definitive βcureβ 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.Β Not even doctors.
It was hard being told βnothing is wrong with youβ β simply becauseΒ my illness was invisible. All my life I was the βsick kidβ, the one who was always away. I wasnβt 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 couldnβt walk alone in my house. I had to be fed and I couldnβt shower myself. These are things that isolate you and donβt βusuallyβ happen to anΒ 18-year-oldΒ girl. It was a long process toΒ recover from, but through this time IΒ learnedΒ to accept life and what it throws at me.
Although looking back on my childhood I still donβt fully understand why my doctors kept saying to me: βnothing is wrong with you.β
Read more:Β Living with POTS and JHS: what is it like?
Was I subjected to healthcare gaslighting?
Today I still wonder if I was not subjected toΒ healthcare gaslighting: βthe 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.β
How might my childhood have been different if I had been correctly diagnosed years earlier? If only the doctors had stopped saying βnothing is wrong with youβ and actually believed me? If only the doctors were more aware of POTS and CFS/ME?Β
As I only received actual help and a diagnosis after becoming bed-bound, I often wondered βdid it ever have to get this bad?β I once asked my specialist, if I had earlier intervention could this horrible state have been avoided? And his response was βmost likely, yes.β
This is why I intend to keep telling POTS syndrome stories to raise awareness of this illness as long as I can.
βI was living through hell with my body but no one else could see it. Not even doctors.β
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 itβ¦then I got sick.Β I became so ill I spent weeks in bed. So naturally, I wasnβt well enough to have my hair cut andΒ over timeΒ it grew. And it grew.
I have always made an effort to hide what Iβm going through.Β 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 donβt work and I canβt go to university.

I am donating my hair so I can make someone else happy
Credit:Susie Ray
Β
Coping with a chronic illness is difficult and at times I would wonder βwhy is this happening to me?β and βhow can anything good possibly come from this?!β Then, one day I went to a doctor and he noticed I had βbeau linesβ on my nails. These are lines that form because of severe illness and trauma resulting in the body stopping growth.Β
IΒ realizedΒ my body had pretty much shut down, but remarkably I still had decent hair. So I thought to myself, βmaybe there is something I can do with this?β This when I researched about donating my hair.Β 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 Iβm 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 didnβt 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.

Susie Ray
Susie Ray is a 21-year-old blogger from Brisbane, Australia who is finding hope through life with chronic illness.
Caption:
It was hard being told βnothing is wrong with youβ - simply because my illness was invisible. How might my childhood have been different if I had been correctly diagnosed years earlier? If only the doctors had stopped saying βnothing is wrong with youβ and actually believed me?