I forgot I had MCTD.
Since Christmas, well, since I can remember really, I haven’t experienced a flare-up. I’ve been eating healthy, exercising almost daily, working late and sleeping well. Sure, I’ve been tired. Sure, I’ve thought about my slow muscle recovery, but only after a challenging workout with my new trainer. I’ve felt achy here and there, and there’s been some swelling. But nothing like it used to be. Nothing.
I forgot I was sick.
It all started with one cough, two weeks ago, and since then I have been in the slow, painful process of remembering. This doesn’t feel like a regular flare-up. It’s different, less controllable and less able to be slept or stretched away.
When I went to the doctor’s for the second time this week, I was shocked to hear that lung infection is a common, serious complication of MCTD. I was surprised with myself, much more than this news. I knew that. I knew that MCTD was bigger than the genetic markers that confirmed my diagnosis, the achy joints, swollen appendages, and immune issues. But I never wanted to admit it.
Admitting I’m not the athlete, the stay-up-all night student, or the energetic friend I used to be has been too much. I still can’t let go of all of those pieces of me. So, my way of telling people about my disease has always been with a laugh or a comparison to the flu; something minimal and fleeting. For this reason, I get slews of the following responses:
“But you never look sick?” They say.
“Enjoy those sick days!” They laugh.
“That sounds like a made-up disease. Too many letters.” They play.
It’s taken me a long time to understand why I do this. Since being diagnosed three years ago, it’s taken a lot of frustration with the people closest to me in my life to see that inside, I just can’t admit to myself how sick I am. I’m scared. I don’t want to be twenty-three and fairly certain about how this is all going to play out. I pretend like I just have a sore muscle here and there, letting people believe that my MCTD isn’t a big deal. I allow them to laugh at my pain.
But now, I don’t want to laugh anymore. I just don’t want to fall apart. I don’t want to miss more work, or feel more confusion or discomfort. I just want to accept the hand life has dealt me, and do the best that I can with it. This journey is long. This journey can be lonely if I don’t let people in.
My greatest fear, I think, is of becoming G., the girl with MCTD. I don’t want people to stop inviting me out because they’re afraid I’ll have a flare-up and need to be taken home. I don’t want my gym buddies to comment when I pick up a ten pound kettle bell instead of a twenty-five because my fingers are just too weak that day. I don’t want people to think I’m pretentious or judgmental because I can’t eat gluten-y pizza or ice cream with them because it makes me sick. I also really don’t want people to think that if they stand too close they can catch what I have.
I think the key to coming to terms with my MCTD has to transcend the way I want people to see me, or not see me. I have to come to terms with this for myself, not anyone else. I am not my disease, but I will never be separate from it. It’s my struggle, and my burden to bear. I can’t blame myself anymore for a condition I didn’t contract or catch or will upon myself. At the end of the day, I just want to be my version of normal.
So this is where I am at. Today, despite my nervousness for the onslaught of new tests I will have to go through this week, I see a lot of hope in this journey. I am blessed with so many great things, people, and experiences in my life. I have good friends who support me, and a job that allows me to help others and not worry too much about the doctor’s bills and expensive groceries. I am informed about my condition, and I am young and ready to fight. I’m scared, but I’ll do whatever it takes to just be ok.
Now, it’s my time to love myself. All of the parts of myself, even the sick ones. Maybe I can help others who struggle with the same disease that I do every day. Maybe I can just be more honest with the people I love. Either way, I am thankful, I am getting better, and I am blessed.
A page from my Grandfather’s journal. Miss you every day.