A Chronic Illness of Today
I have lupus. Systemic Lupus Erythematosus to be more specific. I had it before Nick Cannon and Selena Gomez brought it notoriety. To be fair, I am somewhat relieved to not have to explain it to strangers as often. I also have Rheumatoid Arthritis, Reynaud’s and a few other things. Lupus is an autoimmune disease, a chronic illness without an established cure. Essentially, “autoimmune disease” means that a person’s immune system malfunctions at some level. Currently, I am writing this in the middle of a global pandemic. Where people like me are strongly encouraged to stay home as much as possible and avoid unnecessary exposure (translation - avoid human contact). I am an extroverted-introvert, but at my core I am an introvert. Yet, I miss people more than I realized I was capable of.
Living with chronic illness - any chronic illness can be insanely challenging. I am a therapist so I consciously choose to focus on the positive. “I have been gifted an appreciation of life due to my several close calls and extended hospital stays.” “The good days mean that that much more.” The most dangerous focus of all? “It could be so much worse, therefore I shouldn’t complain.”
When I was in high school, I met another teenager through one of those hospital support programs. She had lupus too and had a stroke as a teenager. A stroke as a complication from lupus. As a college student sitting in an infusion clinic once a month, mostly surrounded by adult-ier adults with kids and grandkids. I heard stories of lost organs, transplants, and pregnancy horror stories. I also heard the occasional miracle story. What is the point of this monologue? I have had chronic lupus for most of my life, and I have learned to live with the tough stuff. I have also learned that it is very much okay to experience frustration when you have been dealt a crap hand. I have learned that even though I didn’t have a stroke or need a kidney transplant, getting bad medical news is still bad. I have learned that it’s okay for me to acknowledge my sadness, even if I know someone else whose story looks different. Notice I did not say better or worse - I only said different.
This year, the entire world has essentially been diagnosed with a chronic illness with no immediate end in sight. Yet some people never learned how to deal with life, when life is actively working very much against them. Others have lived their entire life in broken systems and/or with broken bodies, then add in the hand this year has dealt us all. In my case I am brown, a woman, and every morning I wake up very aware that my body is working against me. Please do not use this piece as an attempt to tell me to eliminate dairy or take vitamin D. I literally cannot take any more vitamin D and I don’t even like dairy. I am not opposed to your suggestions but please know I have already seen more than my fair share of holistic practitioners/doctors in conjunction with my medical team who write prescriptions as part of their role in my care. However, when I can’t breathe through my lungs because the lung tissue is inflamed - hearing “you should be eating organic” (or my favorite - “you should have more faith”) is not the move. Just like when your friend does or does not decide to send her kids to school or daycare curing a pandemic, hearing “that’s not the best decision” is not the move. Everyday is a day to wake up and decide how you can fight for a whole life in the best and healthiest way for you and your family. The key is - you decide for you and your family. You don’t decide for them and their family. Obviously, if you see abuse - you tell someone. If you don’t like how Jane is feeding her kids meat from the chain grocery store over meat from the local butcher, choose to focus on how Jane is feeding her kids. Focus less on how Jane is not living her life, your way. More importantly, if you are Jane - you focus on how you are feeding your family. That is all.
My healthiest days sometimes mean grabbing the emergency microwave meal I always keep on hand for the days where I am pure exhaustion. Autoimmune disease symptoms almost always include “fatigue” at the top of the list. A common symptom of 2020? Fatigue. I take medicine - whether prescription or supplements 3x a day. That is what I *need* to do. However, I’m usually not hungry (side effect of about 3 different things, pick one). So add fatigue + loss of hunger + general dislike of cooking = skipped meals = skipped meds. That was a sloppy sentence, and frankly it’s least of my worries….But that my friends, is the point.
Every day, you pick your battles. Sometimes, that battle is not the healthiest dinner, or the smoothest sentence. The battle is choosing to eat enough food, so you can take the meds, before very needed sleep. Your battle may be choosing sleep tonight over productivity, so you can be productive well tomorrow. Your battle may lead you to choose takeout or Pb&Js over cooking for the family, so you can have enough energy to be with your family. Guilt is never the victor here. Guilt is the opponent. Once upon a time, I felt incredibly guilty. They were eating organic whole 30 to care for the autoimmune issues. I tried that and frankly I was so stressed I got worse. Stress is a trigger for my health. So, I have a lot of microwaved broccoli with cereal. It’s a vegetable with a main dish, and no stress. (No children were harmed in the making of these gourmet meals.) “Comparison is the thief of all joy”, or in my reframe - comparison is the producer of increased stress.
I have lupus. We have 2020. It has been terrible. There, I said it. I can admit this year has been a crapshoot. I can also admit that I have had more time to focus on things I never would have prioritized in a “traditional” year. I can admit that I have cried way more than usual. I can also admit that I am learning not to be scared of love, in all it’s forms. I can admit that I mostly hate working from home. I can also admit that working from home is my body’s healthiest option. I can admit that pretty much all of my hobbies are non-essential activities. I can also admit that I needed more time playing than I realized - legos, a dog, markers, and crafts for the win.
The way you live with chronic illness is to choose to live with all of you. All your feelings, and all your needs. You will never know what that looks like, focusing on your neighbor. The only way to learn what that life looks like is to first acknowledge whatever feelings you have about being dealt the crap hand to begin with. Then make space for what you need. Choose to focus on what is working, what you are capable of in the season you are in. Ask for help if you need it. Maybe it’s a therapist, maybe it’s social distance style coffee with one of your favorite friends, maybe it’s a lot more walks outside, or re-organizing your work from home space in a way that works better for you. Maybe it is all of the above. It is absolutely not looking at what your neighbor is doing, and comparing your today to theirs. The way you live with a chronic illness is first, to choose to live your life, the healthiest way for you.