Did I say I was done for the night? I lied. I have another thing on my mind that is really grinding me.
Today I had lunch with my coworkers. We sat at a big table for one of my coworker's birthdays, shooting the shit about work, talking about all the things that drive us nuts about our boss and the general status of things. It isn't the best way to spend the middle of the day when you have to go back at 1 PM, but it is still frustrating nonetheless to be in a place that has so many flaws and pretend they don't exist.
I feel like that's how my illness is treated. It sucks, it really can affect me for the rest of my life, it's distracting while I'm dealing with it, and it will never go away. My illness doesn't have me, but I own it. I own it because it explains why, since 2010, I have had so many 'unexplained' issues that now finally have an answer. I am proud to be a relatively healthy voice for MS. I am not ashamed of it. But I feel like I really understand, especially today, why so many people never tell their coworkers, their friends, or make it known that they support the cause for fear of being associated with it. Because at the end of the day, no one wants to talk about it.
I talk about my MS at church a lot, because I feel like it's a safe place. I can't be denied a calling because of my MS. Most of the people at church don't know what it is and don't care; I look fine, so what's the problem?
In my job, however, that is not the case. We know full well what might happen to someone with MS. I am an "ADA Risk," and many people might consider me unemployable. So I feel like I have no choice but to be dishonest about my diagnosis if I need to get a job. I was denied a previously scheduled interview when I was honest with a potential employer about why I had to postpone my visit, because I was ordered not to fly by my doctor after my diagnosis. It is scary, unfair, and makes me worry for my future.
Today at lunch, I felt more lonely than I've felt in a long time. I'm pregnant without a mother. My sister is so freaked out at my MS that she never asks about it and the whole thing just makes her uncomfortable, so she never asks about it. My husband seems to have gotten tired of it all, and this latest flare up is just a presence in our apartment that he doesn't want to talk about. He can't say much about it anyway, so I guess it is almost preferable.
But at work, it's more of the same. More questions that make me feel like they think I'm faking a mythical issue from long ago. A quick inquiry here, another there, but silence the rest of the time. They ask me how I'm doing with my pregnancy, keep asking me when I'll finally 'pop out;' these are people that see me every day, who know I am sad I don't have a belly, stop asking me about that. When I told one of them two days ago about my recent flare, how I was scared and upset that my pregnancy didn't keep me in remission as I had assumed it would.
No questions. No real emotion. Just surface, because it makes everyone uncomfortable. I didn't tell anyone that I was dying, that I had cancer, that I was incurable. I told them I couldn't feel my feet and it had implications about my stress level. Hiding how I'm feeling only increases that. Makes me feel self-conscious. It's hard enough that I feel I have a big secret to keep from most people in my life, never mind the people I spend the most time with choosing to ignore it.
What I'm trying to say is, more concisely - this is a condition of loneliness. Outside of other people with MS, it's impossible to describe how you're feeling. Impossible to get other people to understand. I will never forget telling my mother a week after my Dx when I was going to get infusions that I couldn't feel my leg, to have her retort as she ran her fingers up her arm that, quote, "There are parts of my arm that I don't feel either," and I immediately knew she just didn't get it.
I know no one gets it. I just ... wish they would ask.
MSloan
No comments:
Post a Comment