The Unspoken Fears of Living With Vascular Ehlers-Danlos Syndrome

“I hope you’re somewhere prayin’
I hope your soul is changin’
I hope you find your peace fallin’ on your knees”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The lyrics to Kesha’s song “Praying” that had just moments ago inspired me could still be heard through the ear buds now abandoned on the floor after they were ripped from my ears.

I cried as I tried to reach the phone that was only inches away.

My arms weren’t cooperating with my brain. As I prayed for them to work, they instead flopped around on the floor next to me.

“I hope you find your peace.”

I lay crumbled in the main entrance stairway unable to move, convinced that this was how I was going to die.

“I hope you’re somewhere prayin’.”

I could do nothing but cry as I was unable to control any part of my body.

If this were an article about strength, I would continue to describe how that moment allowed me to overcome impressive circumstances for the purpose of inspiring everyone but that isn’t my intention.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

When you have a chronic illness, strength is fleeting and moments of struggles are countless.

It isn’t inspiring; it’s frightening, it’s sad, it’s unpredictable and so very frustrating.

I was diagnosed with vascular Ehlers-Danlos syndrome (EDS) at the age of 23 when it was discovered that my lung had filled with blood and required surgery just after I experienced a stroke.

Looking back on my childhood, it’s clear that something had always been wrong as there are symptoms of my condition throughout all of my memories. I love roller coasters but I remember hardly being able to walk after spending a couple of days at my favorite theme park. I never knew that it wasn’t normal to ache so bad that you can hardly move. I also never realized that other people could play volleyball without busting veins in their arms and hands.

It’s hard to describe the feeling of being 23 years old and diagnosed with a condition that can’t be cured, only treated.

Truthfully, the word treated doesn’t feel like an accurate way to describe what happens when you have this condition. A better term is the word “react” because what happens is often done in a scramble, and if it isn’t done fast enough, you can die.

Vascular Ehlers-Danlos syndrome is life-threatening because patients are at a high risk for rupturing arteries, muscles and internal organs. The life expectancy of someone with vascular EDS is therefore significantly shortened.

At the time of my diagnosis, the median lifespan of vascular EDS patients was 42.

I was 23 years old; I had just survived lung surgery and a stroke and had likely already lived over half of my life. It was devastating beyond comprehension. It was so overwhelming it took my breath away.

People say that time heals all wounds, but the shortened life expectancy still packs a punch seven years later and is just as terrifying today as it was the day I’d first heard it.

After my diagnosis, my zest for life disappeared and in its place is a perpetual tightness in my chest. Alongside this paralyzing fear is anger. Life isn’t fair and I desperately wish that I could experience it in the same way as everyone else.

I feel like I need to be doing everything now because it will soon be too late. I constantly feel the pressure of a looming deadline that no one else can see.

Friends are praising me for my strength and positivity but I don’t feel strong or positive at all. Instead, I find myself sobbing uncontrollably because I’m scared, angry and exhausted.

The first time I joined a Facebook group for patients with vascular EDS. I sobbed reading posts from the families of members of the group who had died. So many lives ended way too early.

I can’t feign strength for much longer. I’m deteriorating both physically and mentally. They don’t tell you about the toll this condition will have on your emotional wellbeing.

I’m tired of feeling like I can never move forward. I’ve become afraid of doing anything because every time I try to do something my condition gets in the way and I have to take what sometimes feels like 100 steps backwards just to get a single step forward.

I hate feeling as if I have no control and I’m tired of fighting just to stay alive.

But I will continue to try to push forward and repeatedly fall because it’s the only option that I have. 

Getty Image by pinkomelet