Something I’ve noticed in life, is that there is a stereotype on everything… Before I was diagnosed with MS, I hate to admit that I used to be judgmental of others. Or I would stare and wonder what was “wrong” with someone. I’m ashamed that I used to even have those thoughts.
Why am I ashamed of it? Because it’s being close minded. Also because I am now on the ‘other side’ of the judgments made. I don’t have “the look” of someone with a disability. Obviously, I’m grateful that I am no longer in a wheelchair and that I worked to gain back my walking capabilities. But at times… I just feel like it would be ‘easier’ for it to be known that I have disability… Not so that I wouldn’t be ‘judged’ but so that I wouldn’t have to answer the numerous questions that come up when I’m not able to do a certain thing.
I have hidden physical disabilities along with mental disabilities. For those who question if mental issues can cause disability… YES they can.
I’m a stay-at-home mom and sometimes I feel like I can’t even do that job right. I forget things that have to do with my kids’ school or sports events.
For example, my youngest son was playing t-ball…. And parents of the team members have to volunteer for certain things during the season. Like bringing the drinks & snacks for after the game, keeping score of the game… things that I CAN do. But there were other tasks that were needed to be volunteered for that I just couldn’t do.
So when we had our team gatherings to dish out the responsibilities… and I wasn’t speaking up to volunteer for working the concession stand (which entailed standing for a long period of time outside in an enclosed area, with no breeze, AC, etc.) Now, I was usually one of the moms who volunteered first to do things that were asked, so I got some looks when I wasn’t volunteering.
There was a time slot we had to have filled by one of the parents for the concession stand and the parents who had already tended to the concession stand, felt like they didn’t need to volunteer again and that other parents should step up, which is completely understandable.
Now obviously I was the youngest mom in the group, so it’s like “Oh she is young, she can do it.” Well no, not really. So I had to explain that I have heat intolerance due to a disability. Sadly, I received some eye rolls after that statement. So I said, “Would you be pushing me to do this, if I was in a wheelchair?” They all said no.
So there it is, the stereotypical viewpoint on what is a disability and what isn’t. Not to mention, it wasn’t just the heat intolerance I was worried about, completely. If I’m outside in the heat for a long period of time, I get fatigued… my cognitive dysfunction worsens… I get weak. So it wasn’t JUST the heat that worried me… it was the domino effect that would come if I were outside in the heat for a long period of time.
When I’m asked what I do for a living… I tell them that I’m disabled, which gets those wide shocked looks in response. I then explain that I volunteer for an MS Organization, MSWorld, and that I’m also an MS advocate. Because I don’t feel like I’m just disabled.
I’ve also been asked that if I can volunteer for MSWorld, doing content management and social media, why I couldn’t do it as an actual job somewhere else. That’s the tricky part for people to understand. But the bottom line is, an all-volunteer team who LIVE with MS everyday, whether they are diagnosed or a caregiver, run MSWorld. So, I don’t have to explain in depth why I can’t do something one day, or that I’m in a flare.
I know that there are compassionate employers out there, who would understand. But I don’t want to commit to something that I can’t 100% commit to and do what is expected of me at all times. When you “work” with people who actually ‘get it’… it takes that burden off stress away.
There are also times where I’m meeting someone new… say someone my husband works with. He has told them that I have MS and that I’m disabled but volunteer from home. I can tell that when they DO meet me that they aren’t expecting to see me look so ‘normal’. Honestly, I wouldn’t be up for it to meet them if I was having an “MS Day” in the first place. So more than likely, they are seeing me on a “good day”… or better than most kind of day.
I can tell sometimes people don’t understand why I’m fussed over…. Like, when I’m at a softball tournament that my husband is playing in for the weekend. We usually go sit around under a canopy when we’re in between games. Most of the guys, who are on the team, know about my MS and actually understand it and are very supportive.
When I say people look at the situation wondering why I’m being fussed over, it’s when I’m getting overheated and the guys will get cooling packs for me or force me in the car with the AC on. I do say force me, because I’m usually having fun hanging out and I don’t want to be secluded in the car to escape the heat. (I never said I was perfect when it comes to my MS… I’m actually very very stubborn.)
I honestly wish that society in general were more understanding about disabilities… that there isn’t an age limit on them, a certain “look” to it, or something like that.
I read this article about invisible disabilities when it comes to handicapped parking and I wanted to share a certain quote that really goes with what I’m writing about. “Compassion means not sneering at or verbally harassing someone who does not appear to be disabled but occupies a handicapped parking space. The operative word here is ‘appear.’” Click here for the full article.
I know this is a long post but there is so much to say on this matter… I could go on forever, but I’ll stop for now. Below is a picture I made... One has a picture of me in a wheelchair, one has me trying out a Assistive Device for Foot Drop, the other is myself and two of my friends from MSWorld that have MS as well... Just showing the different 'looks' MS has given me... In each picture, I'm living with MS, my disability... but do I "look" disabled in all of them?
What is a disability in people's eyes? Not all disabilities have a certain 'look'.
Do you fit the stereotype for someone who has a disability?
Have you ever experienced any of the following financial struggles due to your MS?