How To Handle Chronic Illness When You Still Look Fairly Healthy
How to navigate being ill when others think you’re not…
I’ve been sick since I was seventeen, and I fought it for so long. I had a very rare bladder disease called interstitial cystitis; think bladder infection symptoms minus the infection. I sat in my urologist’s office with a lot of men and managed an illness that kept getting worse. At one point I almost dropped out of college, because I was so embarrassed about going to the bathroom every half hour. My boyfriend, now husband, convinced me to stay.
The Mayo Clonic removed my shrunken bladder when I was thirty-two, and I thought I’d waltz through life healthfully afterwards. I now have too many illnesses to count, and I thought lupus was the worst; but now I have kidney disease and heart issues and EDS and more. What’s tough about being in pain every moment of your life is when you look fine. You know what I mean. Your body is hurting you so much that you want to scream, or have a pity party; and everyone says you look great!
What can we do to make others understand we are so not okay? Try telling your closest family and friends how you feel, and hopefully they’ll know you’re not doing well. But they can’t read minds, so they might need reminders. That’s a thorny issue, because they don’t want to hear every single day that you feel sick; and yet, if you don’t tell them; they wonder why the bills weren’t paid, why the laundry remains clean and unfolded (we need a folding laundry invention, please), and why dinner is pizza…again. We’re as frustrated by our bodies thwarting us as they are.
Not wearing makeup is an option. We are conditioned to cover up our flaws, but why cover up our illness? People with cancer often are the ones who are treated with the most compassion, and I wonder if it’s because they frequently lose their hair? It’s a tangible symptom of their disease. My aunt’s lupus robbed her of her hair, but my aunt chooses to wear wigs and cover up her illness. And she looks so thin, people say in admiration. She’s thin, because lupus attacked her digestive tract.
What if we do go along with looking sick, rather than always fighting it? What if we don’t always wear fashionable clothing out? We can choose comfort, because too often our pain makes clothing touching our skin hurt. It’s tight, confining and uncomfortable. Be kind to your body. Be kind to you. If you don’t feel up to taking a shower, because it will take almost all the energy you possess; then don’t. Wash up with a washcloth and tie up your hair.
Telling others often doesn’t work, because they forget. I haven’t stayed in support groups because I find them depressing, and I want to dwell on ways to beat the illness rather than how to deal with the restrictions imposed on our bodies. I still run away in my mind from all that is wrong with me, and I think it can be good to a point. We don’t want to bring others down all the time, but if they’re mistaken into thinking our silence or our pushing ourselves beyond what is healthy (and we know it when we do it), then what’s the answer?
Telling our partners we are overdoing might help. We might say we’ve decided today is a day to ignore the pain and restrictions. It’s not up to others to decide when we get to push it more. We pay the price, and it’s often a heavy price. They can enjoy the day we’ve chosen to do more, but it is our day. We get to choose. They walk in good health nearly everyday, so they don’t understand being too exhausted to sit and file insurance claims. We do. We know when we’re so sick it takes too much energy to watch a complicated movie or read a thought provoking book.
Walking through this world in a body that works against us is tough enough. We feel cheated, sad, angry, upset and misunderstod. And then we pick ourselves up and keep on doing, keep on moving, keep on going even when we know we still look okay to the world. Maybe we should have signs saying we’re almost stunned by the pain. Or that we can barely breathe. Or that walking to the mailbox is too much, so being at the grocery store is our social outing for the day and maybe all we manage for the week. Until then, we have to be our own advocates.
Speak up. Say maybe to most commitments, because we never know how we’re going to feel on October 3rd. It’s tough for others to understand, but it’s kindest to let our friends and family know we want to join in and hope we can. Say maybe, and leave it at that. I missed a bridal shower today, and I really wanted to go; and I think the healthy people don’t understand how we can’t do it. If we just sucked it up and went! If we were more disciplined!
One last thing. Living like we do, means we owe it to ourselves to splurge sometimes and let someone make us feel better. Massages are wonderful, if you can find a good place to go. Pedicures relieve tension and stress. Having others touch you in a non-sexual way can be beneficial. Or you can buy yourself a treat, though we do need to watch our calories and food intake. I try to enjoy Starbucks, and it means the world to me when I’m feeling sick and down and a family member takes the time and effort to bring me my favorite drink. Have small treats on some days. Not all the time, but occasionally.
We might not be able to reverse our illnesses, but we can walk with dignity even when we can’t walk very well. I wish you good luck and good days on your journey.
