With a disabling condition, seeking help is part of independence

I must look like I need help all the time. I don’t own a shirt or any other article of clothing that says so, and I don’t think I have a helpless look on my face, either. I smile often, sometimes genuinely and sometimes with my mouth formed in that way that all disabled people know. The point is that I try my best not to wear a scowl or project resignation.

Maybe someone stuck a “Help Me” sign on the back of my wheelchair. It’s not like I know what’s going on behind me, but I don’t think that possibility, or even the chair itself, is it. My chair certainly contributes to making visible (if imperfectly so) the disabilities caused by my multiple sclerosis (MS), but helpful strangers were attracted to me long before I lost the ability to walk.

I probably need to go ahead and make the first of several disclaimers. I’m not ungrateful for help. I know I need it sometimes, but knowing it means acknowledging the reasons behind the need. Sometimes it’s hard to do that with a genuine smile.

Recommended Reading

February 7, 2019 Columns by Jennifer (Jenn) Powell

Asking for Help with Secondary Progressive MS

‘More coffee, sir?’

In general, I prefer that a person ask rather than guess about my abilities, and for the most part, people do that. Even if I do look like I need help, that has limitations: I must also look like I’d bite if a stranger touched me without asking, unless they let me smell their hand first, because no one does.

There is, however, a kind of asking that chafes me something fierce. It’s when I’m asked repeatedly if I need someone’s help. That’s like an overly eager waiter who stops by the table entirely too often asking how your meal is. I want to ask, “When I said I was fine, do you think my own assessment of my own condition isn’t accurate? Are you like the kid in Disney Pixar’s “Up,” asking over and over, hoping I’ll change my mind so you can earn your “assisting the disabled” merit badge?”

I don’t want to be your good deed, and as I’m fond of pointing out, I didn’t wake up in a wheelchair today. I know my limitations, and I’m not ashamed to ask for help if I need it.

Do I, though? Do I really know my limitations? My primary progressive multiple sclerosis is the epitome of predictably unpredictable. My limitations aren’t the same from hour to hour, much less day to day. I know me, but with variable MS symptoms, maybe I can’t ever be completely honest about my limitations.

Am I ashamed to ask for help? My pride always reminds me that I spent 20-plus years being a helper, and helpers don’t ask for help. That same pride also tempts me to make people ask multiple times if I need help so I can pretend to “grudgingly” accept. I give in to it more often than I’d like to admit.

My wife, who is my primary caregiver (and yet still, somehow, primarily my wife) reminds me often that as in tune as she is, she’s not a mind reader. Being independent sometimes means needing to use my voice to ask for help. I wonder if there’s an “asking for help” merit badge. I wonder if my stubbornness and pride would let me earn it.

I still refuse to be anyone’s virtue-signaling deed of the day, though.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.