When My Ehlers-Danlos Syndrome Made Me Feel Alone


My name is Emmie.

I love art, coffee and the color yellow. I have a tattoo in Spanish, I am going to university in a few weeks and I was diagnosed with a genetic condition.

Notice how I wrote about what shapes my personality before I stated a fact? Yes, I have Ehlers-Danlos syndrome (EDS) and I’m the only person in my family with it, which means I feel very alone. But, the key word in that phrase was “family.” Despite how I may frequently feel at 3 a.m. when the nausea gets too much, or my hips are slowly slipping out of joint – I am not alone.

I live with my mum, my stepdad, my 3 year old cat, Luna and my 11 month old puppy, Otto. I own a Ford Fiesta called Jean, I’m going to train to be an art therapist the midlands three hours away from that sturdy family unit, and once I’ve flown the nest in six weeks time, I still won’t be alone.

As I sit here and write this, today my mum got offered a job back in the National Health Service, something she has wanted to return to ever since I got sick. I bought my car and drove for the first time after buying an air freshener, and I took my little dog out for a 45 minute walk – which for someone who the past two weeks has been struggling to stand without my head throbbing and the syncope building, this was a huge improvement.

So, why after such a successful day am I sitting in bed overheating in heaps of pain feeling so very alone?After a day socializing and making progress, surely that would be contradicting my successes? But unfortunately, living with EDS means you cannot take anything for granted.

I could try another round of progressive muscle relaxation. I may try and have another glass of water, but while trying to stop this headache and dizziness progressing, I’ve thrown over a liter down my throat with little success. While feeling hopeless I have been searching for some “miraculous cure” for my symptoms, which is now totaling the third time this week. I’ve also investigated in the spoonie community. Yet, I feel very alone.

How do I combat this? It takes time. “Ride the wave,” as my most recent psychologist used to say to me when I lost hope or had a negative feeling towards myself and my body. It’s something I always used to laugh at her for saying because I found it to be patronizing.

“‘Ride the wave.’ How can I possibly do that while I’m being suffocated by my own chest because my stupid spine couldn’t grow straight?” was often my main insult against my body, as often my scoliosis works side by side with insomnia, grating my emotional tolerance down minute by minute. A year later and one week post-discharge from that psychologist, that silly patronizing quote has since become my mantra.

Yes, Emmie, you are struggling to catch your breath, but this will ease.

Yes, Emmie, you do feel sick, but this isn’t going to last forever.

Yes, Emmie, it is OK to cry, it doesn’t make you weak.

As a wave builds, you watch it gain height, volume and strength. Just when you think it can’t get any taller, it sucks up that final push before collapsing back into the water and the process begins after.

As my body starts to struggle, more and more of my components that make up my EDS will worsen. The more upset I become, eventually I’ll have that cry. Afterwards, things will slowly start to ease and settle until the next time that wave builds.

It is not my bodies fault for struggling, nor is it the fault of my mind. My lungs, heart and my brain are all organs that need different treatments, but with time they will all settle.

They settle because when I felt dizzy and started to become rapidly fatigued at brunch three days ago, my stepdad got me a cold glass of water and my mum held my hand as I drank it and started to pick up. When I met my nanny the day before last and it was recommended that I remove dairy from my diet, we went into the supermarket and found some alternatives and the cashier suggested things to try. When my Mum put out a feeler yesterday on Facebook to see if we could find a suitable car ready for my move to University, friends of hers stepped forward and suggested things that they were aware of.

In the past three days, six people supported me. Three of those people were strangers. Whether they were consciously aware of that or not, they helped. The waitress at brunch making sure the water was ice cold, my stepdad ensured I got what I needed, my mum offered emotional guidance, my nanny and the cashier aiding me on a new chapter, and friends of my family assisting on finding me a car. Those six people guided me along the path of hope.

When you hit a point of feeling alone, sometimes this is due to someone not giving you the correct care you needed. But, rather than concentrate on that negative, think of the stranger that offered you their parking ticket in the car park to save you fumbling for change. Think of the cashier that took genuine interest into your conversation.

Tonight I felt alone as I am the only chronically ill person in my home.

I felt alone, but I’m not.

My name is Emmie, and I am not my EDS.

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