A Look 'Behind the Curtain' At My Life With a Disability

Every day, just like every other creature on this planet, I have my routines and needs. And just like every other creature on this planet, I have challenges. Being a person with visible disabilities, you can simply look at me and make some educated guesses on what my challenges might be. But there are a few things you may not know about, because they are not discussed. They are private and often embarrassing, but they impact my daily life and my relationships. And I’m not alone.

Most people with a physical disability have their “behind the curtain” issues that are uncomfortable to talk about. But talking about them is what helps educate, enlighten, and makes us feel like we’re not alone. So I’m going to talk about them now.

​Bathing and Dressing

Ever notice that your friend with a physical disability takes so much longer to get ready, or that they always set appointments or meetings for the afternoon? This is because many of us require help for personal hygiene. I have contractures in both shoulders and a hand I can’t use, leaving me with limited mobility in my arms. (I call them my “T-Rex arms” because I can only reach about as far as a T-Rex could!) I require help showering, dressing and fixing my hair by a female and a male caregiver. This means I must be naked and vulnerable in the presence of another person. It also means they must touch my body, sometimes in uncomfortable places. The whole process takes so much longer than it used to with an able body. Because of this, I only shower Monday, Wednesday and Friday. By the time the weekend is over, I’m feeling pretty grungy!

Skin Issues

Anyone familiar with sitting in a wheelchair for 16 hours a day understands this one! Skin doesn’t like to be chafed in one spot over and over again, or pinched between bone and 100 pounds of weight for hours on end. Wheelchair users, particularly those who have no sensation, must be vigilant against skin breakdown, which can lead to pressure sores, cellulitis and infection. Many diseases and conditions can cause rashes and lesions. This is not only physically uncomfortable, but often mentally and emotionally uncomfortable.

And let’s not forget the annoying pinching and squashing of flesh that can happen! Since my illness, I lost a great deal of weight and muscle tone. My flesh and skin are looser, and my spine is twisted with scoliosis. I must occasionally shift my hips and move my bottom around because my cheeks are feeling squished or something is getting pinched. It’s a bit embarrassing when someone asks me “You OK?” after they catch me doing the doggy-butt-scoot in my seat!​

Toileting

​This is the main one most people don’t talk about because it’s private and often embarrassing. Ever notice that your friend with a physical disability never uses the bathroom when they’re out, or sometimes leaves sooner or more suddenly than expected? That is because many of us require help during the process. Because of the limited mobility in my arms, I require aid to get my pants back up. It took me many years to develop enough mobility to clean myself after eliminating. Before that, I required aid to clean up after a bowel movement.

Most public toilets are very low, even the ones in the disabled stalls. I regained the ability to stand and walk short distances, so getting onto the toilet is not a problem. Getting off, on the other hand, is almost always impossible! Fortunately, the first time I discovered this, I was with my caregiver, who was on hand to help me out. I can just picture myself in that public washroom sitting on the toilet with my pants around my ankles, trying to reach the door-knobby thing with my T-Rex arms while someone tries to crawl under the door and a crowd of onlookers coaches me! Let’s just say I have gotten pretty good at peeing standing up.

Many people do not have full control over their bladder and bowels. After my illness, it was two years before I could sit on a toilet. It was two-and-a-half years before I regained full control and was able to get out of diapers. But because of the many medications I was taking (particularly opioids), I had constant constipation. In order to relieve it, I sometimes needed help administering suppositories. I don’t care how comfortable you are with your caregiver, this is far from a comfortable experience, mentally as well as physically! Other people with disabilities may require the use of catheters or ostomy bags which must be periodically emptied and cleaned.

Sex

Let’s face it, this area can be intimidating and stressful no matter who you are, in whatever kind of body. “Am I attractive?” “Do they think I’m weird?” “Will they hate my stretch marks?” “What if they feel my rolls?” We all have these kinds of questions at certain times, and we have all lacked confidence or felt uncertain about intimacy. Having a physical disability or condition only heightens this.

Everything is different in my new body, including sex. I am happily married to a man who still finds me very attractive, and the feeling is mutual. We share a deep, intimate bond, mainly as a result of my struggle to recover from a near fatal illness, and his tremendous support and dedication. There’s only one thing missing: the sex. We haven’t made love since my illness for several reasons, emotional as well as physical. I won’t go into the gritty details of my sex life, but I will tell you there are many reasons why people may not have sex, like chronic pain or spasticity, contractures or joint issues, mental illness, and of course the ever-present body image issues and societal pressures.

But don’t feel bad for me. I am far more fulfilled in my marriage now than I was before my illness!

I hope I have given you a deeper insight “behind the curtain” in the lives of people with physical disabilities. At the very least, I hope sharing my own experiences has made you feel as if you’re not alone. We are all just human, trying to get along with the cards we were dealt.