The Cult of Positivity

When I was first diagnosed with multiple sclerosis, my mom brought me her tablet to use in the hospital. I laid on my stomach with my right arm propped on a pillow as to not upset my IV. I went to the Internet and did as much research as I could on the available disease-modifying drug treatments, and I wanted first person accounts so I could make this huge decision. I found a myriad of groups on Facebook, many Twitter and Instagram accounts, several message boards, and even a social network called My MS Team.

They all had one thing in common that I found frustrating. They all focused so hard on that fucking “mind over matter” bullshit and positive attitude, leaving no room whatsoever for true feelings. They all emphasized that “you have MS, it does NOT have you.”

Frankly, that statement is bullshit. It makes me want to take my cane and beat people over the head.

There are some days where I feel like I can do anything. I have boundless energy and complete everything I need to do. I can walk completely unassisted, and I forget that I have MS, even for just a second. Then there are the days where I can barely get out of bed to use the bathroom. Even blinking seems like running a fucking marathon. I yo-yo between chills and sitting in a cold shower because of Uhthoff’s phenomenon (a temporary worsening of symptoms due to a rise in body temperature). I need my cane to make it down the block to the bus stop.

Positivity hasn’t done a damn thing to help my MS. It didn’t prevent me from getting MS, it won’t stop the progression of MS, and it won’t treat or cure my MS.

Memes about “positive mental attitude” and damage done by negativity are rampant, especially on Facebook. These do not inspire me to do anything except hit the “leave group” and get the fuck out. I don’t want constant reminders that MS doesn’t have me. I want people I can commiserate with, who understand what I’m going through. I don’t want to constantly be told that “it could be worse” – that shit does not help at all.

In my opinion, 100% positivity all the time is unhealthy. Is this to say positivity is inherently bad? Not at all! I am quite the positive person, generally speaking. However, I need to feel all my emotions, not just the good ones. I also need to feel safe expressing said emotions, whether they are positive or not. Sometimes, I need to feel pissed off. I need to feel scared. I need to feel defeated. Sometimes multiple sclerosis DOES fucking have me. And people need to understand that and give me room to run the gamut of emotions.

I can’t find who said this, but someone on My MS Team said, “It’s okay to hate this disease and what it does to you.” It’s okay to vent, to swear, to cry and to scream. It’s also okay to be happy! Whatever emotions you need to feel, just feel them.

Advertisements

Erasure

A meme I recently saw come across my Facebook timeline really pissed me off. It was originally posted by David Wolfe, the man who does the NutriBullet infomercials and generally spreads a lot of woo around on Facebook. Anyone who looks at his feed regularly can see that he’s all about erasing disability. He’s shared plenty of “disability is just a mindset”-like memes in the past, and he generally just pisses me off. And it’s not just what he posts, but how many of his followers treat his word like gold.

The meme that made me write this was posted last week and has been shared by several people on my friend’s list since. It reads, “Never own a disease. Reduce the amount of time you talk about being ill. Refuse to allow illness a place in your consciousness.”

Screw that shit big time. For a few reasons.

First off, I would love the luxury of not thinking about MS. It would be great to go back a few years and not have to go to sleep thinking about whether my legs are going to work right the next morning without my cane. I’m reminded constantly about my illness. Every day when I take that little yellow pill, every work shift when my walking slows from the heat in the kitchen, every time I struggle with a button or a zipper, I’m smacked in the face with MS. Every time I wake up with legs like cinder blocks, I have to think, “Hey, you’ve got MS, you can’t just jump out of bed and run off to the bathroom.” I don’t get to push it to the back of my mind; it affects every damn thing.

Second, who are you to say I shouldn’t talk about my illness? Is it because it makes you feel uncomfortable? Do you just not want to hear about the struggles of being disabled? I am not going to stay silent about my illness just to placate others. Not talking about disability, to me, is what propagates the stigma surrounding disability. We NEED to talk about our illnesses and our struggles to help create a larger understanding of disability in the world.

And lastly, by telling me to stop talking, you are erasing what has become a huge part of me. It’s like anything else that describes me – I have blonde hair and blue eyes, I live in Wisconsin, and I’m disabled. And I own my disability. I take pride in my disability. I think being disabled has changed me for the better. Dancing around disability helps absolutely no one, most of all the person who lives it every day.

No one gets to police what I say, and no one gets to erase a major part of who I am.