Imagine every morning when you wake up your joints are unnaturally achy. After stretching, you go about your morning routine which includes immediately checking the weather to see if the angry fiery sky orb also known as the sun is extra angry that day. If it is, it’s time for sunscreen and long sleeved shirts regardless of the season. If it’s too cold, you wear extra gloves and socks because your fingers and toes might turn black and blue after going numb. You take your iron supplement for the day because there’s a chance you might be tired before noon. If your immune system is considering a rebellion you apply extra makeup to your cheeks and nose to hide the bright red rash that has suddenly developed. You hit back pill after pill because not only do you have medication for you just being you, you have extra medication to control your anxiety and depression that’s been made worse because of again, you simply being you. Finally, after all of that you double check your bank account to make sure you can afford the medication and expensive specialist doctor appointments.
The above isn’t an account of absolutely everyone that lives with Lupus but many have similar experiences. Today is World Lupus Day and May is Lupus Awareness Month. Five million people worldwide live with their immune system fighting against them, most of them female and a significant amount of them women of color. When you have Lupus, your immune system can’t tell the difference between foreign invaders and your body’s healthy tissue, which then causes damage and in some causes chronic pain in a multitude of ways. Anything that wants to invade is also free to do so easier with the immune system ready to lash out at anything and everything. Basically it’s a Civil War with your insides as the playing field and Tony and Cap don’t really seem all that concerned about civilian casualties this time around.
Agents of S.H.I.E.L.D. showrunner Maurissa Tancharoen has Lupus. She’s been open about it for years ever since her diagnosis and recently she talked to the Lupus Foundation of America about her own flare ups almost interfering with her road to motherhood.
“It was sort of like this miracle dream come true,” Maurissa said of the early stages of her pregnancy. “I had what I now sarcastically call my adorable pregnancy. By the 20th week I was still really small, just had a cute little bump.”
Within a few days, all that had changed. Her feet and ankles swelled to about five times their normal size and Maurissa and Jed spent New Year’s Eve 2014 in the emergency room. “I was feeling so faint. I was clearly swollen and obviously dehydrated. My kidneys were inflamed and malfunctioning, so there was an excess of fluid in my entire body. It all sort of spiraled from there,” she said.
Maurissa remained in the hospital for months as doctors played a careful balancing act between her kidneys and the baby. “Lupus creeps up on you. No matter how you try to keep it at bay, the hard fact is that it’s always there, brewing underneath,” Maurissa said. “But it was harder to deal with this time because I had my little girl inside of me. They couldn’t hit me with the drugs they wanted to. We just had to hold my kidneys in their dire state with tons and tons of prednisone.”
As the mother of a now one-year-old, Maurissa is still learning to understand and respect the limitations lupus puts on her. The accomplished actress, writer, producer and musician has always been a self-described workhorse.
“And now as a mom, a working mom, it’s even harder because I could care less about myself. But if I’m not healthy, I’m not my best self for my daughter. I’m not going to miss some incredible milestone by resting for a half hour. That’s something I have to do for her and my husband,” Maurissa said.
I’m a die hard Agents of S.H.I.E.L.D. fan, that’s no secret. But what I generally don’t mention unless asked is that I also have Lupus. The opening paragraph of this article is my general morning routine. Before being formerly diagnosed, I barely survived two major flare ups as my heart was slowly crushed by the inflamed walls that should have been in place to protect it. I live with effects Lupus every day whether I’m drawing and my joints cramp up easily or constantly monitoring how long I’m out in direct sunlight so it doesn’t affect my skin.
Maurissa and I are both ladies of color, both in creative, stressful fields. She hasn’t let Lupus stop her from running an entire network TV show. She didn’t let Lupus stop her from becoming a mother. She overcame every challenge, even the ones she made for herself by continuing to pursue a high pressure career while balancing her personal life. Lupus might slow her down from time to time, but she never stopped. As I continue my design work, various comic book projects and podcasts, Maurissa continues to be my standard on how I should approach each new battle.
For the last year I’ve practiced Kung Fu, something I’d only dreamed about doing for years. After being diagnosed with Lupus and having a few rough bouts with depression, I finally got off my butt and joined a school. It’s stressful, I don’t tell anyone why I’m in pain longer than my fellow students or why I don’t have the stamina I should. But even with the enhanced drawbacks, I keep going because it’s one of the most rewarding things I’ve ever done. The peace of mind and getting to know my own body again vastly outweighs the physical toll. For me, Lupus is about finding balance and I think after everything Maurissa’s conquered, she might feel the same.
I’ve had the briefest of chances to talk with Maurissa on my podcast and it was my pleasure to compare notes on our lives with Lupus. We shared similar experiences but also different enough that we could learn from each other. And that’s what it’s all about ultimately. The amount that the general public knows about Lupus usually starts and stops at the random House joke. There is no standard way to test for Lupus, symptoms can develop gradually over time making a concrete diagnosis difficult at best and expensive and time consuming at worst. But the more the world knows about Lupus, the quicker we can find better, safer treatments for those living with it.
If you’d like to get involved, the Lupus Foundation of America is an amazing resource for information. Donate to the Lupus Foundation of America HERE