These past 48 hours have been strange ones and I’m still trying to process how I feel about everything that has happened or may happen because of it. I accidentally let the cat out of the bag at work in terms of my MS and have been driving myself nuts with conflicting emotions. The facade that I’ve spent these last two months crafting with care has crumbled and fallen to reveal my vulnerabilities and I feel anxiety and excitement and fear and regret all at once. I feel happy about it one minute and then fear and suddenly I’m angry with myself for feeling happiness just a moment before. Then, just as quickly, it switches to excitement and I’m mad at myself for being fearful. It’s been exhausting but whenever I can’t decide how I feel about something, that’s when I know it’s time to write.
Two days ago I had my annual maintenance MRI to check for disease progression and/or brain atrophy. I am extremely claustrophobic so I take Valium, prescribed by my doctor, before each MRI. I take a fairly decent dose to ensure that I’m nice and relaxed and generally pass between states of consciousness and light sleeping during the actual MRI. Because I choose to have my MRIs in the evenings so I don’t have to miss work, one of the consequences is that I sometimes have a really hard time getting up the next morning because the Valium is still roaming around in my system. I had a team project starting at 9am the next day so as I was informing my coworkers that I might be a little late due to the MRI + Valium combination, one of them says, “I understand. My wife has MS and we go through this every 6 months or so.” My head snapped his way, my mouth dropped open, and I just stared at him for a second. I said, “What? Your wife has MS?” then, before I even realized what I was doing said, “I have MS.” It just popped out of my mouth before I had a chance to consider the consequences. We went back and forth for a few seconds with the oh mys and wows and then settled into a nice conversation about doctors, treatments, and symptoms. It was strangely comforting.
Meanwhile, my other coworker is sitting there going, “Huh? MS? You have MS? What’s Tecfidera? How long have you had this? What do you mean by relapse? How do you treat it?” as she looks from me to him trying to understand this MS language we’re speaking. We were so engrossed in the conversation and the emotion associated with it that it was almost like she wasn’t even there. She was just background noise. I couldn’t believe this conversation was really happening and things were just coming out of my mouth without thought, which is something that I NEVER do. I’m still not 100% sure what I said.
A few minutes later when the anxiety and surprise of what had just happened wore off, we slowly let her into the conversation and began explaining what we were talking about. I left work that day feeling both a mixture of relief and fear. I felt as if I’d yanked the MS bandaid off all at once vs. little by little as I had originally planned and I felt some regret. While it’s definitely nice having someone at work who truly understands my symptoms and knows the struggles I face on a daily basis, it’s also terrifying to know that my brand new coworkers (51 days on the job) now know that I have a disease that causes symptoms that may sometimes affect my ability to do my job. Most people might see that as a benefit but I can’t help but be afraid.
I’ve always been a very able-bodied, do-it-yourselfer and I try not to let MS keep me from doing the very best job that I can possibly do when it comes to my work life or even my home life, but I know what happens when most people learn about something like MS, especially when they don’t know you very well. They start to look at you differently. They either (a) begin to think of you as a little more fragile, as someone who may need special attention or accommodations or (b) they stop looking at you all together because the idea of talking about something as serious as MS freaks them the hell out.
The ones who look at you with sadness or pity are the easy ones. I deal with them all the time and they eventually come around. They’re usually your family members and close friends or people that know you fairly well. While their sad eyes and concerned voices are certainly annoying, they quickly learn that you’re not really that different than you were before MS. They learn that if I need help, I’ll ask for it and if I need a break or some special consideration, I’ll make it known. Once they realize that they’re not responsible for taking care of you or looking out for you, their behavior returns to mostly normal and they start seeing you as you again.
It’s the others that cause me the most anxiety and I’m terribly afraid that my coworkers will become “the others”. They’re the ones who begin avoiding you because they’re afraid of what they don’t understand. They’re nervous that they might have to talk about it if they even so much as look at you or acknowledging your presence. I haven’t quite figured out how to deal with those folks yet or how to help them become less afraid. It makes me sad because I wonder if it’s something that happened because we just don’t know each other very well or if I didn’t do a good enough job explaining it to them or if it’s just a part of their personality that has nothing to do with me. I want everyone to feel comfortable around me. I consider myself very open and accepting of all types of people, ideas, and situations and I hope that others see me that way as well but when they become uncomfortable and quiet around me I begin to sense that they’re somehow afraid of saying the wrong thing so they just say nothing at all. I wish those people would understand that nothing they say is going to make me sad or angry. Chances are, I’ve already thought about or said the absolute worst thing you can imagine so you’re not going to surprise me. I know what the potential prognosis of MS is and talking about it or my symptoms or struggles isn’t going to make it any more real than living it every day has.
There’s also a third type of person out there that I don’t get the chance to experience as often as I’d like. They’re rare. One of them just so happens to be my amazing husband and the other is my very good friend/previous coworker. They take my MS seriously but somehow manage not to let it affect their interactions with me. They’re supportive and sympathetic when I need it but the rest of the time they’re just themselves. They joke about me and my limitations but they don’t let it affect their overall image of me or my abilities. They include me in things just as they did before I was diagnosed and even if I say “no” to 100 invitations or suggestions, they never get mad and they still invite me to that 101st activity. To be honest, sometimes I think they forget that I have MS and I love it. After all, I forget myself sometimes. They take me as I am and for that I’m grateful.
As I begin to sort my thoughts and my feelings into the appropriate compartments in my brain and start to wonder which type of reaction my coworkers will have, there are a few things I want to mention. My strength and motivation aren’t a front that I use to get through the day or to make people think this hasn’t affected me or that I’m stronger than I really am. This is me dealing with a life changing diagnosis the only way I know how: directly and with as much effort as possible. That’s not to say I don’t grieve for the old me though. I wish I could still handle a whole workday without the debilitating fatigue that comes with it or tolerate the heat without paying for it for days later or use my right hand like I used to but I can’t and I’m not afraid to admit that or talk about it. It makes me mad as hell some days and other days it makes me cry but those days are becoming fewer and further between as I encounter fewer surprises. The worst thing anyone could do is force me to bear this burden alone by pretending like it doesn’t exist. It’s a fine line and I’m not sure how to explain how to walk it because I don’t have to. I have to live it so I’ll leave you with this. Be honest. Be aware. Be brave. And as John Lennon said,
“You don’t need anybody to tell you who you are or what you are. You are what you are.”
Inspired by the Daily Post prompt: Facade.