TreeHouseView

I have MS, and one of the things about a disease like MS is that it’s a “hidden” disease. For many people who are diagnosed, the signs and symptoms aren’t outwardly visible and this can be frustrating for everyone. particularly the MS’er.

In March of 2022, I joined the bajillions of people who had flocked to TikTok during the pandemic when we were all stuck being Safe At Home, and I joined because I had heard of BookTok, a glorious community of readers and writers whom I was looking to source book recommendations from. I inadvertently found MSTok at the same time, and instantly had a community of people to bond with over this weird disease.

I had just started to experience some chronic symptoms after about 16 years of living relatively symptom free while floating down the river of Denial and I was blaming COVID for bringing those symptoms on. Any time an immune system has to go into overdrive to fight off a viral infection llke the ‘Vid, a person with MS, and probably anyone who lives with any chronic autoimmune illness, will find that they may experience a flare up of existing symptoms or new and exciting symptoms come barging in. I got to experience the latter, and I was half in denial, half pissed off, but mostly wanting to be proactive and hop on board the DMT train (MS meds).

One thing I’ve always been great at is masking. I’m a pro. I can mask with the best of ’em. I cover things up like it’s my job. I’m also a people pleaser to the n’th degree and the last thing I ever want is for anyone else to feel any discomfort because of me. Enter being raised by a mother with little to no ability to give or show affection and who firmly believed in “children should be seen and not heard” and that should shed some light here.

It’s fine. I’m fine. Everything is fine.

My mask looks like a smile and a well-timed “oh, but how are YOU” designed to shift the attention off of me and onto you so I don’t have to admit there’s anything going on other than the rent. I don’t like attention in any form. so whether or not there’s anything simmering under the surface, my mask is supposed to look the same.

Will you ever see me without my mask? The odds are not in your favor with that one…I don’t let many people meet the Wizard behind the curtain.

But back to MSTok and that shithow–after my initial delight at finding an instant group of people with whom to bond over shared experienes, I found myself going through serious Buyers’ Remorse. Not only did these people not mask, nor did they sugarcoat, nor did they try to find any silver lining in anything anywhere…they seemed to delight in absolutely fucking wallowing in their shared misery. They didn’t seem to want to talk about anything else al all…ever.

I hung in for a bit, hoping to find a thread to cling to, and I did find a few people that I continue to follow and interact with, but largely speaking, those people are not my people. I don’t find any benefit in whining and wallowing. It’s one thing to talk about your situation, your feelings. your whatever…but to make it your everything is just not healthy in my opinion and that is what I found to be the case with the content creators who dominate the MSTok space. The focus on the negative was all that there was for most of them. Some of them focused their platform on educating people about the disease, research, etc., but the majority of the initial group that I came in contact with just seemed to want to stay on board the Pity Train.

What does this have to do with faking it, with the Mask? The dots I’m trying to connect are that even when I’m feeling sorry for myself or wallowing, you probably won’t know it because my mask is in place. It comes in several different forms—humor and sarcasm are my faves, as I can get through most anything with laughter.

The MSTok’ers don’t seem to mask, unless the wallowing is their mask. I think I take the “suck it up, Buttercup” adage a bit too seriously, because I do indeed, suck it up, which is the opposite of what I saw on TikTok. I was so unsettled by several of the seemingly more popular creators and their “woe is me” ongoing diatribes that I actually blocked their accounts so I wouldn’t have to see their negativity come across my feed.

My mask might have loosened a bit during this time only because I had to let people who didn’t know that I have MS in on the diagnosis, and being vulnerable is bound to cause a mask to slip.

I will probably always put on a brave face, no matter the circumstances—it’s just what I do. I’ve always been one to stay calm in the moment and then if I do have any kind of freak out, it’s after the fact and usually a solo endeavor. I think I wear a mask of calm the majority of the time.

I’m fine. It’s fine. Everything is fine…