The Stigma of Accepting My Body's Need to Use a Mobility Device

I grew up an athletic child, participating in year-round sports and always outside. I feel deeply connected to Mother Nature, and when I got to college I went on multiple long distance backpacking trips by myself. I have always been able to move my body, even when it brought on extreme pain.

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

The signs were always there: orthopedic surgery in middle school, constant shoulder and patellar dislocations, POTS, gastrointestinal troubles, weird skin scarring and chronic fatigue, yet it took 25 years on Earth to be diagnosed with Ehlers Danlos syndrome (EDS).

As a child, my pain was invalidated by adults in my life. When my shoulder would dislocate during a basketball game, the game would temporarily halt while I picked myself off the court in tears. I’d go to the bench to pop my shoulder into place but return to the game, because if I didn’t I would be benched for the whole tournament by my coach. He was known by parents and other teams to be especially hard on his players, and I was no exception.

My fatigue would cause me to fall asleep in classes in high school, but only one teacher ever sent me to the nurse’s office. My pre-calculus teacher told me to drop the class so I wouldn’t fail because my behavior was “unacceptable.”

Though I was in pain, I still participated in athletic endeavors. I didn’t realize that what I was experiencing in my body was abnormal from my peers, I believed I just had a low tolerance for pain. I went on with my life and though sluggishly, could always do what I wanted to do.

Until recently. A little over a month ago my life became physically unmanageable. I lost vision in one eye and panicked when I visited my primary care provider. She asked if I experienced headaches, to which I replied, “Yeah, but nothing abnormal for me.” Headaches have been such a central part of my existence that I didn’t know people live their lives without them.

By way of many tests and even a brief admission to the hospital, I was diagnosed with Ehlers Danlos syndrome and secondary idiopathic intracranial hypertension (IIH). My eyesight has improved, but I still have intense fatigue and chronic pain.

Leaving my bed is impossible most days. I lie with my torso propped up against the wall to ease my headache, sleep when I can, and eat when I have the energy to get to the kitchen. I went from being a mobile, able-bodied young person to being unable to do most basic tasks like brushing my teeth and taking a shower without having to sit down.

I knew in the back of my mind that a mobility device of some sort would help me considerably, but I didn’t know to what degree. When I couldn’t participate in physical therapy anymore due to my fatigue, I knew I needed more help for my body. I brought this up with my physical therapist, and she mentioned getting a walker. Though I had prepared myself for her saying this, it still shook me to my core.

I would never judge another person for using a mobility device, so why do I have so much personal stigma surrounding my own use of a walker? I can rarely get myself to use my disability placard because I’m afraid of people’s judgment, but I only face that when I am leaving and returning to my car. A walker is something that could help me live my life again, and yet I feel so much shame and anger about using it.

At the same time, it is physical evidence of my invisible illness. It is validation that I do struggle. It is part of my genetic makeup, and using a mobility device somehow makes it more real to me.

Getting back to my life as a graduate student is critical to my mental wellness, and if a mobility device helps me accomplish that, I need to have acceptance.

Though I may never be able to go on 100-mile treks through the wilderness again, I can still do what is important to me.

I don’t lose my identity by using a mobility device, I gain my life back.