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.

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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via gemredding.

TOPICS
JOIN THE CONVERSATION

Related to Ankylosing Spondylitis

Red heart of red wool yarn on a wooden background

An 'Expression of Gratitude' Toward the Partner Who Stands by Me and My Chronic Pain

So it’s February, popularly observed as the month of love. While The Mighty community readers surround themselves with love and support, I’d like to make a special mention of my better half. As a person with chronic pain and bouts of woefulness, I have realized the best antidote to my pain is a supportive partner. [...]

What Jigsaw Puzzles Teach Me About Life With Chronic Back Pain

Imagine your life as a jigsaw puzzle… The information on the puzzle box is incredibly limited. It does not tell you how many pieces are inside. The photo on the outside of the box is just blue sky, scattered with soft-focused clouds. As you look at the photo on the box, you mutter, “This is [...]
woman in silhouette looking at orange sunset

Why I’m Giving Up the Illusion That I Have Control Over My Disease

Since being diagnosed with ankylosing spondylitis (AS), an inflammatory arthritis that attacks my spinal and peripheral joints, I have spent the better part of two years trying with all my energy to control my disease. Once I heard my rheumatologist utter the words, “incurable autoimmune disease,” I shed a few tears right there on the [...]
Woman looking pensive while looking out of the window

What I Hope For in the New Year as a Person With Ankylosing Spondylitis

It’s that time of the year when the festive melody of Christmas should soothe the mind and warm up the heart. But here I am, sans the cheer, recovering from a chronic back ache and nursing a state of mind that is only leading me into a pool of depression. A week’s holiday went under [...]