There are dozens of misconceptions in terms of those living with Multiple Sclerosis. People with MS will wind up in a wheelchair. MS is only for old people. If you don’t have issues derivative of symptoms, treatment isn’t necessary. MS is genetic. MS isn’t genetic. There is a lot of room for questions and clarification.
I think the greatest misunderstanding of the disease stems from the fact that most of what we experience is invisible. Try this on for a second. How difficult would it be to not only explain to someone how quantum physics work, but make them fully believe in the theory without witnessing it firsthand? Society typically needs proof to believe anything. Understandably.
Explaining the effects MS has on our bodies is like trying to explain quantum physics to someone who knows very little about science. If they can’t experience it firsthand, they are less likely to really grasp the concept and may question its authenticity.
I myself am an ambulatory wheelchair user. I typically require more use of my mobility aids in the summer months. The heat wreaks havoc on my body and causes everything to break down. My balance is horrible when I’m overheated. I have a terrible time cooling myself down and my legs decide to peace out on a mini vaca when the temps go above 85 degrees. So I can easily switch between using a wheelchair on a Monday, to using nothing on a Wednesday and back to just a walking cane by Friday. It’s all over the place.
You can imagine the looks of confusion anyone would get in this position. Not to mention the question of authenticity. Incomes the need to justify.
I wonder, how many of us living with MS often feel we need to exaggerate our symptoms in order to be believed? We encounter “phantoMS” and the ghosts of MS daily. What if we threw a white sheet over the ghost at times to make it more conspicuous?
I’m proud to say I utilize handicap parking daily. I know what my limits are in terms of sequestering my energy and being careful how I exert myself. But I know on the outside it looks like I am perfectly healthy. It’s not uncommon for younger generations that are disabled to get glares or suspicious looks while parking in a disabled spot. I too myself have experienced this. Yet there's a part of me that sometimes feels to avoid instigating confrontation from a complete stranger, that maybe I would be better off putting extra swagger in my already unsteady balance and stance to justify why I’m parked there in the first place.
But this isn’t the solution. For those who don't understand invisible disabilities, we have the ability to widen perception and raise awareness to close the gap. I know it’s a controversial topic as some feel comfortable sharing while others don’t, the only way to achieve a greater sense of understanding is by educating.
Obviously nobody will benefit by amplifying their disability to feel more acceptance. This is unauthentic and absurd. But I can’t help but wonder if this crosses our minds in hopes of being more understood.
Explaining what we experience is extremely difficult. I use a lot of analogies and try to be as descriptive as possible but the truth is, sometimes I don’t even know what the heck my body is doing clearly enough to even be able to explain it to someone. We just want to be believed. Feeling we need to overly justify only makes us feel worse. Like we have to walk on eggshells.
Yet the justification behind invisible illness continues to push for evidence to support our claim.