March 15, 2022

My occupation is now “retired” after being on long-term disability for years.  Child rearing is over. From time to time, the question surfaces, “What do you do all day?”

Now that’s one of those questions that can be tricky to answer, like the question, “How do you feel?”  It depends on who’s asking and what mood you’re currently in.  It’s
a judgment call.

If it’s a casual acquaintance, I give them a few of the basics: I rest intermittently, exercise or swim, read, write, and volunteer when I can.  One of those subjects will usually switch the conversation toward another direction.  There is no sense in getting into the details of what a typical day is really like; it would probably make them uncomfortable, speechless, and sorry they asked.

Besides, everyone throughout their life has something of their own to deal with. Or, getting too specific about what I do can lead into unwanted conversation.  For example, there are the people who want to give advice about all kinds of things, which can get annoying if they really do not understand MS.  And then there are the “one-uppers”; who are more interested telling a personal story that is far worse than your situation.

But occasionally, someone asks me that question in a way with a certain tone that will get a rise out of me.  “So, what do you do all day?”   Even when I used a cane, then a walker, and now a wheelchair; I usually “look so good” and am smiling and perky.  I keep busy, rarely complaining.  It’s like they’re wondering why I got disability from the government or why I don’t want to go out somewhere.

Like most people with MS, I do things on my own as much as possible and strive to maintain independence. But that sometimes can backfire on me. It conveys a message that “I can do it; all is well…” Then if superwoman starts to fall apart, I’m asked “What’s wrong with you?”

We folks with MS endure invisible things like the fatigue, depression, numbness, and weakness that make life complicated.  It doesn’t matter whether we are in a wheelchair or not. We have kids and grandkids, chores to do, errands to run, households to maintain, finances to manage.  Life without a chronic illness is challenging enough.  Throw in MS and the time and energy it takes to do a task double or triples. Often, many things get done differently, partly, or not at all.

But how do you explain all this?  Should you try?  Do they really want to know?  If you think so, maybe take the opportunity to say, “not as much as I’d like, I can use some help.” Or is it easier to just say one thing, and then ask in return “What do you do all day?”

Again, it’s a judgement call.

Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net 
www.DebbieMS.com