Pop question: Your wheelchair broke while you were on vacation and now you’re lying in a hotel bed, battling a urinary tract infection. Your phone rings; it’s the person you’ve been dating for the past three months. “How’s it going?” he asks excitedly.
How do you respond?
TO. Lie: “Great! The trip was flawless and I’m having a great time.”
B. Sarcasm: “Great! I’m stuck in a urine-soaked bed with no way to go and a splitting headache.”
C. Minimum: “Eh… life in four.”
D. Honesty: “It’s horrible. I’m stuck in a urine-soaked bed, with no way to go anywhere and a terrible headache.”
There are an infinite number of answers and no “right” choice. Living with a disability puts us in more uncomfortable situations than any sane person would wish, and how we choose to respond and handle them affects our personal lives and, like it or not, how others perceive the disability.
Many of the issues we address do not fall into the simple categories that most of society relies on to understand health and well-being.
As I dealt with a series of setbacks stemming from bladder issues, I lost count of how many times a well-meaning friend told me they hoped I would feel better, when in fact I “felt” fine. I didn’t have any pain. I didn’t have a fever or any cold symptoms. I constantly struggled to find the right response.
Should I just say I have some quad issues or try to explain the weird bladder problems I have? Will sharing that the issues make me practically incontinent and afraid to leave the house help or hurt the relationship?
The same problems can arise when trying to explain a pressure ulcer or dysreflexia. Sure, anyone can understand that a wound needs to heal, but trying to convey the risks that a sacral sore poses to a wheelchair user is a completely different matter.
On top of all that, even if it’s someone I’d like to educate and be totally honest with, I don’t always have the energy or patience to explain everything. Sometimes the best option is to just say you don’t want to talk about it right now. When it comes to your health and your livelihood, you don’t owe anyone an explanation.
No true friend is going to scold you for honestly sharing (or not sharing) what you’re going through, no matter how complex, but there are levels of friendship, and building those deep bonds takes time and requires different approaches with different individuals.
The details of daily life with a disability can be very difficult to process. Whenever I feel frustrated that someone doesn’t understand what I’m going through, I think about how clueless I was about everything disability-related before I got injured. I’d like to think I would have been aware enough to understand what a friend was going through, but chances are I’ve said and done some stupid things that would make me feel bad today.
Now, living on the disabled side, I see every interaction as an opportunity to educate. Don’t get me wrong, I don’t approach every disabled person who violates parking rules or every person who stares at me in the grocery store to spread a dose of basic disability knowledge. You have to be selective or you’ll go crazy. But for the people I interact with regularly and those in my closest circle, I’m constantly evaluating 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 living as a disabled person.
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