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.