The Words I Use to Describe Life With an Autoimmune Disease

I struggle with an autoimmune disease (AD). My doctors call it undifferentiated connective tissue disease (UCTD). I call it something else: Frustrating, unpredictable, confusing, kick-in-the-ass.

I don’t swear much. I was a public school teacher for 12 years and am the mother of a 10-year-old son. I’ve gotten used to watching my language and keeping curse words under wraps. But sometimes the writer in me is at a loss for words. Sometimes only a curse word adequately conveys my pain, my anger, and my helplessness.

Because living with a chronic medical condition is frustrating. I didn’t initially realize how much work it requires – from doctors’ appointments, conversations with the insurance company to determine what is and isn’t covered, refilling prescriptions. It all takes so much time and energy and money.

Then there is the helplessness I feel which translates into a willingness to try a variety of different things (compression stockings, acupuncture treatments, and topical lotions), hoping something will help – hoping for something that will ease the pain, something that will help me remember what I used to feel like before pain became a part of my daily life. Because sometimes all I want is one day without pain, and it rarely happens.

Autoimmune diseases are unpredictable. They attack and hurt at random. There is no rhyme or reason why some people are saddled with them and some people are not. These diseases don’t make any sense either; pain comes and goes at will and isn’t always in direct proportion to anything I did or didn’t do.

My son hears me mutter “frickle-frackle” when my left calf suddenly starts to twitch; the muscle moving violently as if some small, mean alien is inside my leg, squeezing it, and pushing it out. After the twitching stops (sometimes within a few minutes, sometimes after an hour), my leg stays sore and tight.

A month ago, my knee started to buckle as I was at the top of the stairs, about to walk down to our living room. I gripped the banister and called for my husband who helped me to the nearest room, a bathroom, to sit down. For a few minutes, I couldn’t stand. I sat on the top of our toilet seat and rubbed my knee. I saw my son’s worried face and told him, “I know we don’t usually say this word, but I’m going to say it now. This sucks.”

Because how else do you make sense of overwhelming pain that shows up with no warning? Pain that doesn’t follow any fixed set of rules.

Becoming a life-long patient is confusing. I was relatively healthy. I never smoked, never did drugs, and only occasionally enjoyed an alcoholic beverage. (I miss peach margaritas and sour apple martinis.) According to my son’s health textbook, I should be healthy. But I’m not, even though I did everything right. Autoimmune, by definition, means my body attacks itself. Through no fault of my own, my body has turned on itself. My body, which was strong and brought forth a new life, now struggles to get through each day.

How do I teach my son about being healthy, about taking care of his body and his mind and his feelings, when so much is really out of his control? So much really comes down to luck.

I used to think my body was “kick-ass.” Not in the sense that I’d win a Miss America title or land on the cover of “People Magazine” as the most beautiful woman in the world. But, kick-ass in the sense that my body did what I expected of it. I was tough. I had a great pregnancy and didn’t change my daily behaviors because of my growing stomach. In fact, I continued teaching my fourth grade students until two days before my son was born.

But now my body is kicking my ass. Grocery shopping, sitting on the floor with my son to complete a large puzzle, raking up leaves in my garden – none of these activities are easy anymore.

How can I explain to someone, even those closest to me like my husband and son, how my legs hurt? “My legs hurt” doesn’t cut it. Sometimes it helps to tell my son that my legs feel heavy, as if he’s sitting on them (even though he’s nowhere near them). Sometimes it helps to tell my husband that our son and I went for a bike ride and now my legs feel slow and tired as if I’ve got shackles dragging behind me, slowing me down.

I am a woman living with an autoimmune disease. AD.

Adaptations demanded.

Getty Image by juhide