31 Days of MS: It’s hard to battle invisible diseases like MS

Photo courtesy of Brittany Quiroz

Day 2 of 31

This is Brittany Quiroz’s story:

There are dozens of misconceptions about living with multiple sclerosis (MS): People with MS wind up in a wheelchair. MS is only for old people. MS is — or isn’t — genetic.

I think the greatest misunderstandings occur because most of what we experience is invisible.

Explaining the effects of MS is like trying to explain quantum physics to people who know little about science. If they can’t experience it firsthand, they’re less likely to grasp the concept.

I’m an ambulatory wheelchair user. I typically require more mobility aids in summer — heat wreaks havoc on my body. But I can switch from using a wheelchair on Monday to nothing on Wednesday, and then just a walking cane by Friday.

You can imagine the looks of confusion, not to mention the question of authenticity. In comes the need to justify.

I wonder how many of us with MS sometimes feel the need to exaggerate our symptoms to be believed? We encounter “phantoMS” and the ghosts of MS daily. What if we threw a white sheet over the ghost to make it more conspicuous?

I utilize handicapped parking daily. I know what my limits are in terms of sequestering my energy and being careful how I exert myself. But on the outside it looks like I’m perfectly healthy. I’ve gotten glares or suspicious looks while parking in a disabled spot. There’s a part of me that sometimes feels that, to avoid confrontations from strangers, it might be better putting extra swagger in my already unsteady balance to justify why I’m parked there.

But this isn’t the solution. For those who don’t understand invisible disabilities, we have the ability to widen perception and raise awareness. I know some feel uncomfortable sharing, but the only way to achieve a greater sense of understanding is by educating.

Explaining what we experience is extremely difficult. I use a lot of analogies but the truth is, sometimes I don’t know what my body is doing.

We just want to be believed. Feeling the need to overly justify only makes those of us with invisible diseases feel worse.

Multiple Sclerosis News Today’s 31 Days of MS campaign will publish one story per day for MS Awareness Month in March. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofMS, or read the full series.