Thursday, December 18, 2014

MS & Weight: What People Think vs Reality

I post from time to time on a forum for moms. Just about every topic imaginable gets discussed, dissected and debated; this week alone has produced posts on homeschooling, the pressure for young moms to choose adoption, holiday headaches and what to do when you order a lovely necklace online but get a truly awful one instead (you'd have to see this thing, it is's something only the child of Mimi Bobek and Mr. T would wear in public.) 

This week also hosted a question I see online with depressing regularity: 

"When you see an overweight person using a store-provided mobility scooter, do you assume the person is using it because of their weight?" 

Not surprisingly, as is often the case, a large number of people admitted they do.

In seems to never even occur to some folks that a medical problem other than obesity is the reason they aren't walking as they shop. And as one of the forum's disabled moms, I felt it important to show them why making that assumption really does make an "ass" of "u" and "me."

This belief does the disabled community a huge disservice. It sends the message that the healthy don't see you as a person with mobility issues due to illness or injury. They see you as a fat, lazy, overeating, no-excuse-to-be-that-weight, 100% at fault, no-willpower-having, McDonald's-addicted loser. 

The problem with that belief is the problem with most assumptions and generalizations: you are making a quick judgement that likely has absolutely no bearing on that one person's situation. It's little different than assuming a young mother is on welfare, or that a guy with a lot of tattoos is a criminal. You're putting everyone who fits that general description in one box, and assuming they are all the same. And life just doesn't work that way. 

Once they put you in that box of "using the scooter just because they are fat," they then proceed to blame the victim. They are lazy. They don't care about themselves. They eat too much and any weight gain is a result of it. Anything else is just an excuse. 

They are unaware that many medications cause weight gain, a fact the medical community knows all too well. Of course, medications aren't the only cause of obesity in the disabled community: lack of exercise is a problem, especially in those with mobility issues or paralysis. And chronic fatigue can lay anyone's workout plans asunder. 

These factors, when combined with other common issues in the chronically ill such as an increased risk of injury, difficulty healing, and frequent illnesses and infections, make weight gain very easy...and weight loss very hard. Adding insult to injury, you also have to deal with people who judge you unfairly and treat you accordingly. 

That's not to say that thin disabled people don't run into dehumanizing, hurtful stereotypes. Studies have shown that when an individual sees a thin person in a mobility scooter/chair, their first impulse is pity. They assume the person is very sick, and very frail...when neither may be the case. They are often seen as helpless, and incapable of caring for themselves. They are thought of as invalids, and sometimes even as burdens to their spouses, families and taxpayers.

But this is not the case when they see an overweight person in that same chair. Now they assume that person's weight is the reason for their mobility issues, and they are judged to be malingerers and slackers. "Disgust" is a common reaction, and they are much more likely than not to victim-blame an overweight patient than they are a person of average size...even when the two patients in question have comparable diets and difficulties with exercise. The thin person's life has spiraled out of control, making them a slave to the disease. The fat one's life is also spiraling out of control, but it's somehow their own fault and simply what they deserve. 

Both cases do a serious disservice to all disabled people. There aren't just the two choices of frail or lazy, pitiful or disgusting. We are so much more than that!  

For me, it's both medications that pack on the pounds, and a disease that makes it difficult at best to get enough exercise to combat them. As the Spoon Theory so wonderfully explains, I just don't have the spoons for a workout most days.

Like many of my chronically-ill brethren, I am overweight because I am disabled...not disabled because I am overweight. 

And just as unsurprisingly, many people just cannot or will not believe that.

did my best to educate, to share my experiences, but I am not certain it did any good to those few who really have no idea what it's like to be disabled. I can hardly blame them for that! Rarely does anyone understand what it's like to be disabled...unless or until it happens to them. 

I've seen what does happen to the "it's just an excuse" fan once they themselves become disabled. At first, they are determined to prove that they were right all along. They believe they will easily avoid falling into the traps the obese sick are stuck in. I've seen them struggle, get hurt, try again, eat healthy, follow their doctor's instructions...for far too many, they gain weight anyway. 

Next, they try a succession of diets and exercise plans, starting with the reasonable and quickly descending into the certifiable. Chronic fatigue sucks away all their energy, they struggle to adjust to medications and their unavoidable side-effects, and they start to get angry at just how difficult this really is...and even angrier at doctors who can't do anything about it except give you the annoyingly contradictory advice of "get some exercise" and "rest more." 

This stage is followed by depression at the whole situation, ironically treated by meds that put on even more pounds. 

Afterwards, they become defensive, jumping at the chance to let everyone know it's not your fault this is aren't lazy, you don't overeat, why won't anyone believe that?!? 

How do I know all this? Because that used to be me. I learned the hard way. I made some pretty boneheaded assumptions of my own, prior to getting sick and in those early months of oh-crap-this-is-really-far-harder-than-I-ever-imagined. I knew disabled people: my granny, my stepsister, one of my mom's close friends, a classmate. They were all thin. What was I doing wrong? Only to find out the answer is: nothing. 

I have seen it happen to the newly diagnosed, time and time again, over the past two decades. It's just one more unneeded example of how completely out of your control your body and your life has become. You feel ashamed, defeated, terrified, and above all else, overwhelmed. 

I have found that the vast majority of healthy people I encounter out here in the real world really do care and really do their very best to empathize, to be kind to those unfortunate enough to not have their health anymore. After all, it could happen to any one of us, at any time. Like a twisted version of the Joker's creed, we are just one bad day away from that wheelchair. 

Unless, of course, you're fat. Then it's your fault, and no amount of studies, testimonies or explanations will convince them otherwise. 

That is, until they or someone they love is wheeling a mile in my chair.

So what DO I say in these situations? 

•To the people who don't believe medication causes weight gain:

•To the people who believe the problem is really being lazy and making excuses, I share a story about one of my father's neighbors back in Ohio: 

•To the people who don't understand how heat-reactive illnesses make most exercise out of the question:

•To people who believe it's all about overeating*, and all fat disabled people are only fat because of it, and it's a choice (because naturally we would choose to be overweight, because that is a thing people do): 

•To the people who think that you would be much better off walking instead of using that scooter, as it would be "healthier":

Now you may have spotted a pattern here: people who know one out of the millions of people on certain meds/with certain illnesses, and assume that their experience with that single person is indicative of the experiences with them ALL. 

It's the most common misconception about disability that I run into, both online and in real life. They are often steadfast in their belief that their one acquaintance with multiple sclerosis is a model for how the disease operates. They are often stunned when I ask them which form of the disease their friend they had no idea that there were different kinds of MS!

Even so, they continue to compare your disease with this unseen person's. And not just in regards to weight, but in everything from your work status to your relationships to your parenting. All they need to know is that one person who has MS who doesn't have the exact same issues you do...and they have all the proof they need to show that you must be doing something wrong! 

•And so finally, I come to the ones who still insist that it can't be the MS that's keeping you from losing weight/getting a job/farting rainbows. This opinion, which they believe will all their hearts is not an opinion but a fact, is not based on any study, research or medical knowledge. Instead, it is based solely on that one elusive person they know. This person who has MS and is thin/has a great career/farts rainbows frequently. 

To them I leave these parting words on behalf of all people with MS, everywhere, in the hopes that this will someday be common knowledge and I will never have to point out the obvious again: 


*There's a typo in this entry: my phone turned "overeating" to "overstating." Sorry about that.

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