I am sick. I have been sick since I was eleven years old. Shortly before I turned eleven, a trip to my mother's rheumatologist confirmed that yes: I had Lupus. Funny enough, I remember being delighted that I now had a name for everything that hurt or felt 'off' about my body. What was/is it like to live with an autoimmune disease? Well for starters, autoimmune simply means, the disease causes your bodies' immune system to treat healthy tissue, cells and even organs in your body as dangerous. The various attacks of body on body cause inflammation, fevers, joint paint, rashes and much more. About nine out of 10 adults with Lupus are women between the ages of 15-45. So, for me to be diagnosed at 11 was pretty early and pretty scary. Thankfully, my Mother has a hybrid form of both Lupus and Rheumatoid Arthritis (RA). She has faithfully walked alongside me showing me the ropes for living an Invisible disease life. An invisible disease is any kind of chronic illness that is not visible to others as needing immediate or added support. Ever heard the phrase, 'But, you don't look sick." Yeah? That's us!
While I may not have had the journey with my condition as some of you have had, I wanted to share a few things I have learned about living with an invisible disease for 11 years. This article is half- open letter, half-inspiration: People with Invisible Diseases, you have a power! You stand as a testament to the world that loving your body has real results, small joys have never tasted so sweet and a capacity for empathy is one of the most valuable powers anyone can ever possess. People with invisible diseases, this is for you, because you are not alone.
We have all seen one of the fancy little quotes that says, 'Be Kind To Yourself.' Wonderful sentiment. It becomes more wonderful when you repeat it when your own legs won't hold you up, your medication makes you feel totally different than your true self and pain prevents you from even properly holding a toothbrush. Some of this is lived experience for me, other parts of it are the stories of others. Loving oneself when one physical self is seemingly in betrayal is a courageous effort of grace every single day. It is courageous grace that gets us out of bed and fights against the temptation to hate our bodies. It is courageous grace that allows us to step from 99 to 100. Being kind to yourself is no easy task. But, extending oneself the grace to accept our knees hurt, accept that we feel anxious and accept our limitations frees us up to embrace ourselves and embrace others.
Okay. Small joys, I never felt like I was disabled growing up. I did however, tell myself that I would never 'be able' to do certain things. I built glass walls around myself that said I would never run, never be physically strong and never survive a fourteen hour day without napping or taking ibuprofen. Little by little, I slowly took a hammer to those glass walls. Physical therapy rebuilt my confidence in my body and swimming rebuilt my trust in it. It took a wild invitation for a Mud Run in Northern Ireland during an abroad semester in college to push me into the activity I had feared for so long. Just knowing I could 'run' was a huge relief . I felt normal. And now, I am extremely grateful and purely joyful that I am now recreationally rock-climbing. It is everything my body could not do six years ago: grip, bend, stretch, push, bear weight, pull weight and withstand falls. Just because you live with an illness secretly beneath the surface does not mean you can't cultivate your own small joys and victories. Heck, there are those in the spotlight who inspire us to love ourselves. Even extending the confidence to someone else to get help and try trusting their body is a great gift.
Finally, I have never met people so empathetic as my friends with invisible diseases. They have hit the darkest corners and climbed some of the most ridiculous mental mountains and I know from experience to have someone say, "I know what that feels like" is comforting. Empathy is truly a superpower. It is a willingness to offer each other our pain and offer each other our wisdom.
It sucks to be sick sometimes. Other days we don't mind it as much. I have seen my friends do wonderful things like being awesome moms, horseback riders, getting PhDs, getting into grad school for Chemistry, being Spin Class instructors, being lifeguards, being missionaries abroad and so much more. You are not alone in your pain and you are not alone in your experience. Your body is powerful, you are powerful.
