With Autoimmune Disease, There Are More 'Self-' Practices Than Just Self-Care

What does “self-care” really mean? Doesn’t most everything you do throughout the day, in one way or another, fall under the label of “self-care?”

Yet now there is a whole industry that offers products and services catering to those who strive to incorporate an increasing measure of self-care into their lives. Pampering, time alone, time to be, things that make you feel good. They all fall under the umbrella of self-care.

But what about people like me? People who struggle with invisible disabilities? People for whom “self-care” means something entirely different?

The prefix “auto” means “one’s own, by one’s self.” So having an autoimmune disease means it’s all about “self,” though not necessarily self-care.

My disease is, in a sense, self-inflicted; my body attacks itself. I am not suffering the consequences of any prior bad habits (like smoking or drinking). I was simply unlucky, and I developed this illness.

I am a former teacher, but I’m embarrassed to admit that before my diagnosis, I was fairly uninformed about autoimmune diseases. I didn’t really know what they were, and what it would mean for my family and me. I am self-taught, and most of what I’ve learned has been learned through years of firsthand experience.

Google makes it so easy to try to self-diagnose. Like most patients, I look up a new symptom or test result, thinking/hoping/fearing that I may uncover something the doctors have missed.

Experiencing daily pain means I have found ways to self-soothe. Sometimes by using heating pads or ice packs. Sometimes propping up my legs. Sometimes popping pain pills.

It takes a great deal of self-management to live with a chronic medical condition. Making doctor appointments, refilling prescriptions, taking my medications at the proper time each day and speaking with the insurance company are all time-consuming, yet crucial, tasks.

Even now, more than eight years since I first became ill, I still fall prey to self-pity. Why me? What did I do to deserve this? It’s not fair. I’m a good person, so why am I being punished? (There are no answers.)

Each day requires a level of self-restraint. I have to constantly remind myself that things I used to do (standing on tip toes, kicking a soccer ball with my son) are not things I can still easily do now.

I’ve never been particularly good at self-advocacy, but now I don’t have a choice. I ask questions about prescriptions and their side effects. I say no to recommendations of another muscle biopsy. I refuse to go through a third motor nerve conduction study. I push for other options.

Daily pain means I have had to find ways to adapt, to self-help, to look for shortcuts when I can. It’s all about making little things easier and saving up my energy for the bigger things. I re-arranged items in my kitchen cupboards, moving mixing bowls and cookie sheets to cabinets I can more easily reach.

I periodically talk to myself when I’m home alone. Sometimes I remind myself of things I need to do; other times I give myself self-affirmation reminders. OK, you can do this. Just one step at a time. Just go slow. 

Part of being an independent adult means no one is going to tell me to do the things I need to do. I need to be self-motivated, pushing myself to go for a walk and remembering to take my pills at the right time each day.

Living with a constant medical condition requires a level of constant self-awareness and self-assessment. Does my calf look more swollen today compared to yesterday? How does the pain feel? Am I experiencing different sensations, or sensitivities to heat or touch? Am I tiring more quickly than usual? Is getting in and out of the car becoming more difficult? Does my leg feel differently after taking a warm shower?

Becoming a patient with an incurable illness rocked my self-esteem. The diagnosis didn’t initially do it. It didn’t happen until the years went on, and my life changed bit-by-bit, one domino piece falling after the other, culminating in my retirement from my career and losing my identity as a teacher.

It is easy to see myself as weak, flawed and broken. A 42-year-old woman trapped within an achy, creaky body. A positive self-image is a constant struggle.

I become self-congratulatory at the “little things” now. Coming home from the market without fighting back tears earns itself an inner “yes!”. Standing up to put on my pants, without leaning on anything, is cause to smile and be proud of my momentary physical dexterity.

Over the years, I have used my writing to become a self-appointed educator of sorts. I may not be teaching in a traditional classroom, but I am educating my readers. I am trying to give a voice to those with invisible disabilities. I am trying to demonstrate that society’s view of a “disabled person” is quite limited and quite often wrong.

At the end of the day, when the house is quiet, when my son is asleep in his room, and my husband lies next to me, I can go back and revisit everything I did that day with a sense of self-admiration. From the mundane (paying bills) to the physical (playing handball with my son) and everything in between, I still did it. I didn’t let my painful legs stop me.

This isn’t the path I thought I’d be on. This isn’t how I thought my life would unfold. But it’s my life now. And no matter what, I need to remember to shower myself with self-love and growing measures of self-acceptance. My autoimmune disease isn’t my fault. I’m doing the best I can.

And tomorrow, I’ll get out of bed and do it again. Self-care.