Pop quiz: Your wheelchair broke while you are on vacation and you’re currently lying in a hotel bed, battling a UTI. Your phone rings; it’s the person you’ve been dating for the last three months. “How’s it going?” they enthusiastically ask.
How do you respond?
A. Lie: “Great! The trip’s been flawless and I’m having a blast.”
B. Sarcasm: “Great! I’m stuck in a urine-soaked bed with no way to go anywhere and a raging headache.”
C. Minimal: “Eh … quad life.”
D. Honesty: “It sucks. I’m stuck in a urine-soaked bed with no way to go anywhere and a raging headache.”
There are an infinite number of responses, and no “correct” choice. Living with a disability thrusts us into more of these awkward situations than any sane person would like, and how we choose to respond and handle them impacts our personal lives, and whether we like it or not, how others perceive disability.
Many of the issues we deal with don’t fall under the simple categories most of society relies on to understand health and wellness.
While I was dealing with a stream of setbacks from bladder problems, I lost track of how many times a well-meaning friend told me they hoped I’d feel better, when I actually “felt” fine. I didn’t hurt anywhere. I didn’t have a fever or cold symptoms. I constantly struggled to find the right response.
Do I simply say I’m having some quad issues, or do I try to explain the weird bladder issues I’m dealing with? Will sharing that the issues have me practically incontinent and fearful of leaving the house help or damage the relationship?
The same issues can come up trying to explain a pressure sore or dysreflexia. Sure, anyone can understand a wound needing to heal, but trying to convey the raised stakes a sacral sore presents as a wheelchair user is a whole other ballgame.
On top of all that, even if it is someone I’d like to educate and be fully candid with, I don’t always have the energy or patience to break everything down. Sometimes the best option is to simply say you don’t want to talk about it right now. When it comes to your health and livelihood, you don’t owe anyone an explanation.
No true friend is going to roll out on you for honestly sharing (or not sharing) what you’re dealing with — no matter how complex — but there are levels of friendships, and building those deep bonds takes time and requires different approaches with different individuals.
The nitty-gritty of daily life with a disability can be a lot to process. Whenever I am frustrated with someone not understanding what I am dealing with, I think back to how clueless I was about all things disability before I was injured. I’d like to think I would have been aware enough to understand what a friend was going through, but chances are I said and did some dumb things that would make me cringe today.
Now, living on the disabled side, I see every interaction as an opportunity to educate. Don’t get me wrong, I don’t roll up on every disabled parking violator or supermarket starer to disseminate a dose of Disability 101. You have to be selective or you’ll go crazy. But for the people I regularly interact with and those in my inner circles, I’m constantly assessing how and what to share.
Figuring out how to find the approach that works for you is one of the many fun pastimes that come with disabled life.
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I have multiple autoimmune issues including Interstitial Cystitis, Fibromyalgia, Migraines, IBS, and Restless Legs…(my mom was a quad). I’ve been dealing with the “what do you tell people” issue since the early 1980s.
Early on I didn’t tell anyone but my immediate family and my boss had to know because of doctor appointments. But eventually, because I needed bathroom breaks at work, a few people had to be told. I didn’t go into detail, but it was interesting to find out they were relieved since many had been worried that I had cancer. I realized sharing with people wasn’t a bad thing.
During the time I was diagnosed, I was dating and then married my husband, so he was with me through the time when I was the most sick. He’s stuck with me for 35+ years. We’ve both developed our language for my illness, “I’m ok” means that regular people would feel lousy and in pain but I’m managing; “I don’t feel great” means regular people would feel really bad and in significant pain; “I need to parallel park in the dark” means I’m in significant pain and not well. I do tell him details about anything wrong with me, he goes to most doctor appointments other than checkups with me because what affects me affects our lives together (the best advice my urologist gave us at my first appointment). I sometimes wait when there are new symptoms before saying something to him so I don’t worry him, but we share everything about how I feel physically, and he knows how I feel emotionally about things because he needs to know how having a disabling illness affects me mentally in a negative and positive way. This allows him to tell me how he feels, as well as offer support, and humor when I need it.
I share details with a few friends and family when it’s needed. I’ve had the issues long enough now that most people who know me casually are aware that I have some medical issue that means I’m not “the man I used to be” (a joke I say since I used to be a volunteer firefighter). If someone asks I’ll briefly explain and share more details if they inquire. It’s surprising how often people mention they have similar medical issues and are interested in talking and asking questions. (I find the same true when the subject of my mom having been a quad or my mother-in-law having had Alzheimer’s comes up),
I think sharing your personal experiences honestly with people is important to let them know you better, to be open and honest, to educate others, and to have an empathetic connection with people who may need help. As you age and mature you become better at discerning how much to share with each person by the cues they give during a conversation.
Be open, be kind. You’ll find you have a lot to give, even on your not so great days.