Tonight, my sister sent me some pictures of her getting ready for a hip hop concert back home. She was dancing around her kitchen with her roommate, curling her hair, sipping on a pretty alcoholic beverage that presumably contained lemonade, and I became really sad.
My diseases really came to a head at the start of college. They debilitated me in the mornings after spending the night out dancing and drinking with friends. They forced me to lie down instead of participate in my college job as a tour guide. They rid me of attendance to my favorite classes after picking my dream major because I couldn’t make it five minutes down the street to my class. During what people claim are the “best four years of your life”, I was bouncing around from doctor to doctor and napping through whatever else was left in my daily life.
I get disappointed in these limitations sometimes, even to this day. I found that my first few months after my diagnosis, I was drowning in those thoughts. I was exposed to event after event that I couldn’t attend, life opportunities that I had to turn down, and time with friends and families that I had to let go in order stay in bed and rest. As life went on, though, and these diseases became more usual to me and snarled their way into my daily life and decisions, I became less disappointed because it is what it is. I still have a fantastic life and my diseases and inabilities could be a lot worse (I remind myself often). But every now and then, something silly like watching my sister dance around her kitchen with a drink and flawlessly styled hair reminds me – these are the silly young people things that I should be doing and enjoying. Instead of taking shots at the bar, I’m receiving them at the doctor’s office. Instead of having a late night sleepover with my girls and stuffing our faces with brownies and pizza, I am heading to bed early to prepare for a morning blood draw.
I just realize that it is nights like these that I do feel lonely. It’s easy to have autoimmune diseases when your awareness month comes around and you litter your Facebook profile and pictures with disease banners and ribbons. It’s even a little fun to find support groups and chuckle at users’ clever pictures and witty, sarcastic sayings. But having an autoimmune disease is a constant uphill battle of harsh reminders of its existence. Luckily, life goes on and [hopefully good] things distract you and you might even forget you have such a condition. But the ugly nature of autoimmunity is that it is always there. There isn’t emotional relief for these recurring experiences because they will haunt your life until your last day.
It’s in the face of that reality, that I have learned acceptance. Sometimes people ask me how I handle all these diseases and bad luck at such a young age, and I simply think, because I have no other choice. When a future of potential disappointment is staring you in the face, you have to make a choice to let it sadden you or let it strengthen you. I chose the latter a while ago. Even so, it’s okay for some things to weigh me down and sadden me, but I have to get back up because it will always be there, knocking me down every day if I let it. Strength comes not in being triumphant through all, but in pulling yourself through the mud when you feel stuck. In feeling sorrow, but scraping your way through it and not unpacking and living there.
So tonight, I will turn not to wallowing in what I cannot do, but to the internet. I turn to my blog and to the blogs of others. I don’t ignore my disease or look for a distraction. I embrace it. I search for the wonderful things about it, the things that make me comforted to have such a limitation. I will turn to my support groups on social media. I will comment on posts asking for support and provide it, I will laugh at the group administrators posting relatable quotations riddled with sass, I will pour myself into my autoimmune community because they are how I am strong and how I stay strong.
To all my fellow warriors, no matter what diseases you have or their progressions, you are never alone. The autoimmune army is a strong one, consisting of some of the toughest people I have ever been honored to meet.