Dealing With the Fear of Inconveniencing Others
Throughout my decades of living with multiple sclerosis, from my initial diagnosis to, well, this very morning, I’ve been consistently nagged by an intense desire to avoid inconveniencing others because of my illness. Whether it’s needing help with the basics of life or even just talking about my condition, I usually have a creeping concern in the back of my mind that I might be inconveniencing someone, putting them out, or somehow interrupting their lives in a negative way. This fear is driven by my personal history, my personality, and wanting to be known for more than my illness, and it takes a toll on me.
Growing up around around multiple sclerosis
Probably the greatest reason I became so concerned with my illness inconveniencing others comes from my experiences growing up. As I’ve mentioned in the past, I grew up around multiple sclerosis; my grandfather had the disease. He moved in with us when I was young so that we could care for him (when others wouldn’t - and you can bet that has had an effect on me, too - but that’s a story for another day). Over the years (this was a time when there were few real treatments available), he consistently declined, eventually being completely disabled, unable to even speak or move.
My grandfather required constant care and family sacrifice
He would eventually require 24/7 care. We would hire nurses and health aides; however, we often had to have someone from the family around. While I never considered this too much of an inconvenience (because it started when I was quite young, so it’s all I knew), I do remember having the sense that others felt that way. Through no fault of their own, I might add - I think it’s a natural feeling. Every single plan, whether it was going on vacation (which we seldom all did at once) or even going to dinner as a family, required us to plan around the care of my grandfather. I’d like to think no one resented him, but that could just be a hopeful thought. I definitely experienced moments when family members considered him and our caring for him an inconvenience, and that has stuck with me. It’s created a constant concern that I, too, might inconvenience others.
I think of myself as Mr. Independent
It’s a lot more than just my family history that causes me concern when I feel I am putting someone out; it’s also just part of my personality. I’ve lived a single adult life for a very long time. At this point, I’m pretty accustomed to taking care of things myself. So, when I require someone’s assistance, I have a hard time accepting it. When I feel like it’s something I should be able to take care of on my own, I feel like I’m inconveniencing others if I ask for or accept help. I’ve realized that this feeling has more to do with my own anger or disappointment in not being able to do it myself than about me actually inconveniencing them.
I don't want to make my MS the center of attention
Another drive for not wanting to inconvenience others is that I don’t want to make a big deal about my illness. I want to be known as more than my diagnosis, and if I have to bring it up, I worry it takes away from that. I’ve canceled many plans with family and friends because I knew the venue would be too hot or too loud for me.
Avoiding putting my illness on display
I likely could have salvaged some of those days by simply suggesting a different location and stating why, but to do so would make me feel like I would be putting my illness on display. It’s terrible to feel like your illness caused people to not do what they want to do. So, when people suggest meeting at an outdoor location during the warm summer months, it’s a lot easier to just say I don’t feel well or come up with some other excuse than to try to inconvenience them by suggesting a place where I could actually attend.
The effects on my self worth
While it may seem like you are just being polite and doing the right thing at first, the more you worry about inconveniencing others, the less you feel worthy of people’s time. It takes a toll. When you worry that your illness makes you inconvenient to others, your self worth will slowly but surely begin to plummet. Consistently valuing others’ convenience over your own accommodations is a recipe for disaster. You have to remember that you matter, no matter what accommodations you require. You don’t require a cooler location because you're b*tchy or self-centered, you require it because you have an illness that you didn’t ask for. That’s what’s important to remember with anything you might think is inconveniencing others: you didn’t ask for this, it wasn’t your decision to get sick. Always remember that, and remember that you matter, no matter what accommodations you require.
Do you celebrate your MS Anniversary?