How Living With Chronic Pain Taught Me to Love My Body

My body is more than my pain. My body is more than my pain. My body is more than my pain.

This is what I repeat to myself when my Ehlers-Danlos syndrome (EDS) symptoms are flaring up and I am stuck in bed with ice all over my body, trying to numb the debilitating muscle spasms and headaches. Sometimes I am able to believe myself when I say it. Sometimes it goes in one ear and right out the other. But to me, it’s a necessary reminder, especially on my worst days.

Before chronic pain invaded my life and my body, I was incredibly active. In high school, I played volleyball, and while in college I started working out regularly with a personal trainer. After graduating, yoga became my drug of choice. I spent at least four days in the studio, sweating and breathing and getting in tune with my body.

For someone with a history of self-hatred and body dysmorphia, practicing yoga was an intense form of healing, both internally and externally. Not only was I in-shape and feeling healthy, but I was also able to accept the things about my body that I could not change.

Within a very short period of time, I lost that sense of peace and acceptance when my neck and shoulders unexpectedly gave out on me for no apparent reason. Migraines and muscle knots were becoming a monthly, then a weekly, then almost a daily occurrence. Soon after, I developed an intense aversion to heat followed by chronic fatigue. In a matter of months, I lost my yoga therapy and the confidence that came along with it. I was no longer the person I worked so hard to become.

Three years and countless appointments and blood tests later, I was finally diagnosed with hypermobile EDS, which is a chronic connective tissue disorder caused by faulty collagen production. Up until that diagnosis, I had been struggling to come to terms with my new normal. In many ways, I still am. One thing I have had to work on again is my relationship with my body.

It’s easy as a person with chronic pain to view your body as the enemy. You feel it constantly failing you every day, making it impossible to do things you used to do so easily – make your bed, take out the trash, clean your dishes, transition into Downward Dog. The lack of mobility can lead to viewing your body in a not-so-positive light. And when you are prone to self-abuse in relation to your flesh and bones anyway, it’s 10 times harder to treat your body with respect.

When it became obvious that my pain was going to be a permanent part of my life, I had a few choices to make. I could ignore it, which I did temporarily through irresponsible and reckless behavior. I could crumble and complain and see my existence as being doomed, which I also did and sometimes still even do from time to time. Or I could find a way to accept my condition as best as I could, as well as find a way to honor my body and appreciate it for what it is – mine.

I have been getting tattoos since the age of 18, and I’ve always loved the idea of embedding a part of my life or personality into my skin forever. However, since I’ve been struggling with chronic pain and since I’ve realized I need to make friends with my body, getting inked has taken on a whole other meaning.

I now see the art as a way to decorate my body and create a masterpiece out of it to remind myself that my body is more than my pain – it’s a canvas, and I can make it anything I want. I also dye my hair every shade of the color wheel as a way to experience vibrancy, and I experiment with makeup on a regular basis. These small changes and acts also gave way to something I never thought I would ever be involved with – boudoir modeling.

As a former photographer and as a lover of vintage styles, I was always attracted to pinup and boudoir art. I never delved into it personally due to my body image issues, but as my pain escalated and as my acceptance of it came to light, I decided to embark on this journey to not only challenge myself, but also to truly see my body as beautiful and worthy and strong again.

Through this voyage, I’ve been able to look at my stretch marks and love them because they show growth. I can look at my thighs and love them because they keep me standing strong (on most days). I can look at my scars and love them because they reveal healing.

Sure, there are plenty of aspects about my body that cause me both emotional and physical pain, but there are many, many more that keep me alive and make me who I am.

I was able to honor my body through my yoga practice years ago, and I’ve only recently been able to understand that I can still do that just via a different avenue. I can move my body in gentle and subtle yet powerful ways when I enter my pinup model character. I can treat my body to ornamentation and show it what it is capable of enduring and becoming when I sit down in a tattoo chair. I can now forgive my body on my toughest days and revere it on my best.

Because I now know that my body is more than my pain – so much more.

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

Thinkstock Image By: dudyka

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

Woman with neck pain.

How Ehlers-Danlos Syndrome Affected My Day

“How are you doing?” amongst other questions are very difficult to answer. The usual answer you will get from me is, “I’m OK, thanks.” This doesn’t even come close to how I am but is the quickest and easiest answer I have. Living with pain and fatigue everyday is so difficult for people to comprehend. [...]
Young woman climbing stairs.

How I Keep Moving Forward With Ehlers-Danlos Syndrome

I live life along a very fine line between concern and constraint. I have to think about every single move I make. If I step this way, my ankle may “react badly” and then I won’t be able to walk for the rest of the day. Or if I try to chew something like a [...]
Blurred image of grass and sunlight

What a Victory Means for Someone With Ehlers-Danlos Syndrome

I have Ehlers-Danlos syndrome, and this means it is extremely difficult for me to do even the simplest of tasks. I live with my mother due to my medical problems, and it is hard for me to do chores around the house. Washing dishes causes me pain, vacuuming causes me pain, doing laundry causes me pain — as [...]
People sitting in a waiting room.

When a Doctor's Waiting Room Became a Support Group Meeting

The waiting room in the neurosurgeon’s office resembled the aftermath of a minor bus accident – minus any visible blood. A novice might have mistaken it for an ER. A half-dozen young women are wrapped in neck braces; one sits in a wheelchair as her husband caresses her hair. A 20-something (initially upright, but winds [...]