Fighting for Independence in My Life With a Disability

I want to pee alone.

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

Childless and halfway to 60, it was a strange revelation to have – that this simple phrase which communicates the frustration and desperation of young motherhood, so often shared by my mummy friends on Facebook, summed up how I felt. This very same sentence, and some of those same feelings, perfectly epitomized one of the things I have found most difficult coming to terms with about becoming disabled.

I left home at 18 chasing what was my biggest dream at the time; to be entirely self-sufficient. Not growing your own vegetables and living off the land, but moving from a family home where things were done for me to an empty second-floor flat where I would have to fend for myself. For me it was the pinnacle of adulthood and everything I wanted and needed: holding down a job, supporting myself financially, paying bills on time, grocery shopping, doing laundry… That was my personal definition of success; day to day normality, but on my own terms and in my own way. Total autonomy and freedom. At 18, even with my “dodgy hip,” I had it and it was glorious.

Twelve years on and life now is very different. On the positive side I am very happily married (3372 days) and have two adorable rescue dogs. On the other hand, my health has declined in ways I could never have imagined. What was once an inexplicable dodgy hip was actually the one of the first recognizable manifestations of my Ehlers-Danlos syndrome. Every day, I cling to what’s left of my independence like a spiteful sibling that refuses to share. So when I’m getting my wheelchair from the back of my car and putting it together and someone offers to help, my answer is always no. If my symptoms are subdued enough that I can be out and about in the real world that day, I can manage by myself and I so desperately want to. If things are really bad and doing that, or indeed anything, is likely to use the last of my spoons, I will (reluctantly) ask for help. If I hurt myself while I do something, I will ask for help. If I can possibly avoid it though, I won’t ask for help and this lead me to drawing a proverbial line in the sand shortly after my 30th birthday.

From then on, I made a promise to myself that I will only go to places that are wheelchair friendly, not just wheelchair accessible. When I am invited somewhere new I will go once to assess it and then whether I will return is easily determined by my experience. It’s almost always no. Here’s an insight into the most recent experience: I don’t want to have to effectively ask a staff member for permission to go to the toilet. I don’t want my friend to have to stop eating the delicious and alcohol-infused ice-cream sundae they bought to push me up terrifyingly steep and unstable ramps. And I certainly don’t want said friend and said waitress to stand outside the toilet door while I rush to use facilities as quickly as I can manage in my anxiety-stricken, overly self-conscious state so we can navigate the same obstacles on the way back. I tell myself now that I can choose not to put myself in these humiliating and degrading situations, and it’s not selfish or too much to ask to suggest an alternative location or decide to stay home.

It’s increasingly difficult to hold down a job. I can’t support myself financially, or do the grocery shopping without someone’s help. My independence is being eroded by my illness and I have so little left.

I want to pee alone.