Why It's OK to 'Complain' About My Multiple Sclerosis

There’s a dominant notion that to not complain about a health or physical struggle is dignified, that it is a sign of virtue, of sainthood almost.

“She suffered for years with cancer, but she never complained, not once.”

“You never heard him complain about the many difficulties his disability presented in his life.”

“Nobody wants to hear you complain. A lot of people have it much worse than you.”

Why are we more comfortable with this? Why do we glorify this “silent suffering” approach to disability, chronic illness, mental health?

What is “complaining,” really? Is it someone wanting empathy, needing to be heard and undersood? Is it someone needing help? Why does this make us squeamish?

Is there a threshold at which we cross over the line from communicating to complaining? Is there a number that quantifies it or a tone that defines it?

Is it weakness to admit suffering or struggling? Can someone be empowered by sharing their vulnerability while still needing help or encouragement? This is where I find myself right now, wanting so much to be understood and wanting to open myself up while simultaneously wanting to protect myself beneath the venerable cover of “not complaining.”

In the years since my multiple sclerosis (MS) diagnosis, nowhere has this been more apparent than at work. I have been painfully aware of the liability I carry around with my illness, and I have operated under the assumption that my best defense was to stay at the absolute top of my game. There could be no margin of error. Sometimes, though, the system falls apart. My body revolts. My hands don’t obey my brain, who also betrays me. Suddenly, I can’t work at all, never mind proficiency.

Or, I have to cancel plans with a friend. Or, I have to flake out of an obligation at my child’s school. Maybe I don’t get my house clean or even take a shower. The list goes on.

I just want people to understand — not to pity me, just to really understand me. Which you can’t do unless you’ve gone through it. So, I “complain.”

mom and son making silly faces
Picture of me sharing solidarity with my son over a moment of complaint. Neither of us were able to participate in brother’s skateboarding tricks class.

I share my passions, my interests, my beliefs, and I complain. I share things that I think are funny, beautiful, strange, and I complain. I share killer sales and bad boy band songs from the 90s, and I compain.

I’m not all sunshine and lollipops. And that’s OK.

Sure, there is a difference between whining and communicating, but sometimes it can be easy to assume the first. Sometimes, it can be hard to achieve the second with the level of grace needed to make everyone comfortable when you are hurting, struggling or scared. But let’s all try to make sure  the grandmother with cancer or the neighbor in a wheelchair or the friend with bipolar doesn’t need to feel ashamed to “complain” and, instead, feels safe becoming understood.

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