The Isolation of Living With a Chronic Condition

Living with a chronic condition paired with depression and anxiety is like living in a room with no door – only a window to see the outside world.

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

We are shut off and isolated from the moment we are diagnosed. People become weary of asking how we are for fear of us giving a truthful answer, not knowing how to respond.

It’s always uplifting and heartwarming to see stories shared on social media of communities that come together and help those who are ill and dying. However, with that said, the reason we find those stories so uplifting and wonderful is because it’s so rare. A lot of the time, those who are in need of help have become isolated from peers, friends, family, you name it .

Living with ankylosing spondylitis and Ehlers-Danlos syndrome has left friends fearful of contact, of hugs, of conversation and of sharing experiences in their day-to-day lives.

Last year I was at a low point. I was fighting my employer for leave of absence or, at the vary least, I was living alone and in constant debilitating pain. I was reaching out to friends for comfort, for anyone to listen. I found that my reaching out was a burden to some, one friend even citing that my situation was so difficult that they didn’t really want to listen to it because it was too depressing.

The sad truth is that when you are living with any condition – be it physical or mental – no one will understand that pain more than you. I started reaching out to groups on Facebook for support and guidance. I was living each day feeling devastated, beat down, hurt, but also very angry.

I had spent so much of my time helping others, picking up shifts for friends, making dinners for people who had bad days, making cakes for birthdays when I could barely walk, sending out cards to friends during the holidays. Even after having spent time crying and sharing experiences with these people, I felt so alone when I realized that once you become sick, hurt or diagnosed you get put away in this box.

This box is reserved for those of us who have quite literally hurt ourselves to help others, only to be tossed away like toy a child has outgrown.

My saving grace was finding groups on social media who catered to those like me, people I could reach out to and connect with who didn’t make me feel like I complained too much, who understood what it meant to get lost in brain fog, who knew that if it was too cold, hot, humid or just another Tuesday meant I was flaring and in pain.

Please remember friends, we are in this together, and the actions or lack thereof do not reflect on you, but on the other person.

You are not “defective.”
You are not “worthless.”
You are not “crazy.”
You are not “stupid.”

You are loved.
You are valued.
You are strong.
You are brilliant.

To those of you struggling, please reach out. We are all in this together.

Thinkstock photo via gemredding.