It’s Invisible Illness Week. I don’t think most people know that. But I do.
Somedays I wake up sick and tired of feeling sick and tired. I live with chronic, progressive illness. I have since I was very young and it became much more pronounced as a late teenager. And somedays I cry just from being tired of being sick.
I was first hospitalized for it as an “adult” when I was 17. I would not stop internally bleeding. I could not hold food in. I saw glittery stars all day long. The first few weeks out of the hospital was my first time needing a wheel chair. I used those little electric carts at Target. Mind you, I could walk, I just needed to reserve my energy and it was painful to move. All my joints hurt, my head would pound, and I would be fighting to breath. But I so desperately wanted to get out of the house…
You see, I had lost a full sports scholarship to college for my illness. I had to stop working. I did not drive but now I could no longer walk many places so I was completely reliant on friends to drive me to and from. I could not eat much and I also had to be careful when I ate, how much I ate, and what I ate. I had to take over 50 pills a day. And my mother moved away with my little sister too. My whole world shifted again. At 17 years old. All within the same 3 weeks.
So here I was in target with an older friend, driving around the cart. And I received so many stares from others. They felt like judgements.. judgements that I shouldn’t be using that cart, that my leg wasn’t broken nor was my head bald (as if damaged limbs and cancer are the only forms of debilitating illness). I felt ashamed and thought maybe I should push through it, push through the pain. I have always been sensitive to what others think, to their judgements. To this day, I still struggle to use those motorized carts even when I need them.
I have a host of invisible illnesses that include: chronic pain, chronic fatigue, chronic dizziness/vertigo, ulcerative colitis/Crohn’s disease, asthma, migraines, arthritis, TMJ, Ricketts, visual field loss, PCOS, PTSD, pseudotumor cerebri, depression/anxiety, and sensory processing disorder… to name a few.
What you do not see are the 12-15 doctor visits a month, iron and nutrient infusions, or the scar from my breast bone to my pubic area. People who know me, KNOW I push myself, because if I didn’t, I would go no where. I’d live sad, or worse, angry at the state of my life and all the dreams I will never fulfull if I didn’t push myself often. Not many people expect or hope much from me or for me. If I didn’t push myself, I’d lose myself.
I live in a certain amount of pain regularly that I believe many of those around me can’t comprehend, physically and emotionally.
Then there’s a dear friend of mine. We went to get pedicured a few months back for my birthday. She could not keep her leg in the angle required to get the pedicure. She has a neurological disorder too. She barely makes it around. She fights depression. She longs to be a friend and a mother in a way she’s not able to always. Oh how I love her. Instead of going bowling, we go to McDonalds and use the new computerized bowling games there. It’s the only way she can bowl with her young daughter.
This past week has been terrible. I acquired a cold on my plane ride home from a trip this summer. I have not got rid of it yet. I have a low immune system. I had to go into the hospital for a day to get “buffed up” in hopes of fighting it off. Many weeks later, I’m still fighting it. Now it’s my allergy season. It’s worse than I have ever experienced. This past week I had a couple days where I could do nothing. I was in so much pain from allergies and sneezing. My body ached. I needed pain medicine to make it through. And now I have a huge hernia from sneezing so much. And a flair of tendonitis and shingles and asthma. Oh yea, I’m not allowed to sneeze. And I burst a vessel in my nose. And we’re hoping I don’t get pneumonia. And I got a letter from my oh so lovely neurologist that I love. She’s leaving. And I am sad and nervous about that.
Saturday I went apple picking. And it cost me a lot physically. But I did it and I loved it and I am glad. And some days, I will do other things that will cost me physically. Or I’ll help a friend and her newborn when they aren’t well, even if it’s just making dinner and playing with him while she naps. Because it feels good to give, even when I’m not at my finest. And somedays I need the handicap parking, even if I don’t limp when I walk or have some other noticeable ailment. My body and my mind bear the scars of the illness underneath my clothing, underneath my skin.
There are stigmas attached to invisible ilnesses. Sometimes people don’t believe you. Sometimes they say it. Sometimes not. Sometimes you get looks, or worse, they outright ignore you. Sometimes I don’t get the help or care I need. And I’ve learned to push through and care for myself. Sometimes it’s hard that there’s not more physical help. Sometimes it’s hard when there is help that I don’t need at that time.
I cried when I got the letter from my neurologist saying she was leaving the practice. She would validate my physical and emotional pain and try to help me fit in the mold of how modern society works (bigger, better, faster, more). I struggle and battle in a culture that rarely rests or stops or considers that someone (like me!) might not be able to do or participate in the same things in the same way as others. It’s often felt like a constant game of catch up for me. Catch up to how far others are walking, catch up and push through the long shopping day with others, etc. I’ve learned that I can’t easily be accomodated. So unless I know I can either push through something or make an easy accommodation myself, I just don’t show up. And my neurologist, she’s the one who gets how the U.S. functions and how lost I get in trying to find a quality of life in it.
I have an uncle with MS and a friend with MS. Another friend with a rare breathing issue that could kill her if she gets pneumonia. I have another uncle with cancer and a grandfather that’s dying of a brain tumor. My mother has several diseases as does my biological father and two of my sisters. I have had several housemates over the last 5 years that battle depression and GAD and several more close friends with it. Two friends are fighting addictions. And this last month alone I had a student have 4 panic attacks on the soccer team I coach. Yesterday another student confided in me how she often has them about academics too. And last week a student that I coach told me how she witnessed her parents death and was later adopted and now struggles with mental health. You’d never know it looking at these people. Not one. You could go out for pizza with them and it wouldn’t come up. We all adjust. We all fight some days and rest on other days and laugh about it here and there.
But the truth is, we’re all fighting a battle. For some, it’s invisible, unseen to the naked eye and fierce. And we could all use a few kinds words here and there reminding us that we are seen and not invisible, not someone to be mocked or second guessed for using the electric cart or elevator instead of the stairs or because today we can walk up and down the hill but tomorrow we can’t get out of bed. We could all use a little bit more compassion in our hearts and out of our lips.