Ew, that’s so gross.
Whenever I tell people that I have an autoimmune disease this is the response I usually get. I imagine it has something to do with the misconception that my autoimmune disease is the same thing as AIDS. I understand the confusion, but I’d like to make a clear distinction before I go any farther and de-stigmatize my disease. Autoimmune diseases like mine are completely different from AIDS. I’m not trying to say that AIDS deserves a stigma though, please don’t misunderstand me. I’m simply trying to put a face to a confusing and often confused condition that my mom, grandmother, and I live with daily. Many people don’t know what living with an autoimmune disease is like – partly because I’ve noticed a stigma around talking about your autoimmune disease and also because there are so many different autoimmune diseases that one person can’t speak for the experiences of another.
Almost two years ago I developed chronic idiopathic urticaria and dermatographism. Let’s say it again: chronic idiopathic urticaria and dermatographism. I know, quite the mouthful. Imagine having to say at least three times when I explain my disease to someone. Technically I have two conditions. Dermatographism, or as it is more commonly called skin-writing, means that, essentially, I’m extremely hypersensitive to heat, pressure, and touch. Too much of any of those things and I my skin breaks out. In most cases, the skin just raises up wherever the contact was. Chronic idiopathic urticaria causes that contact point to turn into hives. So, essentially, if I’m bumped too hard, if my clothes rub against me, if I burn myself and I haven’t taken my medications consistently for at least three days, I break out in hives and I’m an itchy, uncomfortable, blotchy mess.
Some people think my autoimmune is cool – and I’ll admit it is sometimes. For example, I had a friend who scratched pretty designs into my arm that then raised up and looked like a white ink tattoo. However, I’ve also been asleep and had friends scratch a uterus into my side – I guess the female version of drawing a penis on a drunk guy? It doesn’t take much for me to break out so very little pressure was needed, leaving me sleeping soundly and unaware.
Honestly, it’s just really annoying. I’m uncomfortable all the time, even when I’m trying to sleep. If I accidentally get my curling iron too close to my face I break out. If I bump into someone I break out. My medication helps somewhat, but sometimes I get hit hard or rub something hard enough that I break out despite the anti-histamines running through my body. It’s frustrating because, though I at least now what’s wrong with me and I know how to control it for the most part, I have to live with this for the foreseeable future and take medication for most likely the rest of my life just to stop itching.
I consider myself lucky, though. I am the third generation of women in my family who have an autoimmune disease. My mom and grandma also suffer from autoimmune diseases, though theirs are far more serious than mine. I’m so grateful to them for agreeing to be open and talk about their respective diseases with me for the sake of this article. Again, I’m not trying to put a stigma on AIDS. I’m trying to take away the stigma on autoimmune diseases based on my experience.
My mom has psoriasis. Compared to some, her autoimmune isn’t that bad, but when she gets a flare up it itches, burns, and hurts. She gets red blotchy spots all over her body from the chest up, but the worst is when it’s on her face. Not only is it painful but it’s embarrassing at the same time. Even stress can trigger a flare up, leading to red, blotchy hives and swollen, itchy patches.
When she has a flare up, she’s constantly bombarded with questions of “What happened to you?” or “What’s going on there.” My mom is honest, saying that she has psoriasis and it’s acting up currently. People tend to hear such an unfamiliar word and immediately be on guard – I know that I was pretty off guard and a little unnerved when I first found out about my mom’s autoimmune disease. I don’t think people realize how embarrassing autoimmune diseases can be. Some people think I hurt myself, some people think it’s really bad dandruff from psoriasis, etc. The reality is that it’s not. We can’t control the side effects of our diseases. We can’t control how it manifests itself and it hurts when people continually ask “Well aren’t you going to do something about it?” Well, I do – or at least I try.
My grandma’s autoimmune, however, is a different case altogether. Fibromyalgia is an invisible autoimmune disease. What is fibromyalgia exactly? Essentially it is widespread musculoskeletal pain – researchers believe that it is so painful because it affects the way the brain processes brain signals. Symptoms include memory loss, fatigue, and widespread chronic pain.
Most people cannot see this disease so they don’t believe you have it. When my grandma tells people that she has fibromyalgia they either don’t believe her or they think she’s making it up to get pity. Sometimes, in rare cases, people are actually knowledgeable about fibromyalgia and they give her pity anyways because they know how hard it is and how painful the person’s life is.
I can’t even begin to think what my grandma’s life is like. She hates having fibromyalgia. She hurts constantly and there’s nothing she can do about it. Medication only brings partial temporary relief. She has to keep smiling, pretend she’s okay, and push through the pain because nobody believes that there is something actually wrong with her. “No one wants to be around someone who is hurting and complaining all the time. And who can blame them.”
I don’t write this for pity. I write this to hopefully shed some light on the real face of autoimmune. I write this so hopefully we can stop stigmatizing people who have an autoimmune disease. I write this so that maybe people can begin to understand what it’s like to live with an autoimmune disease and, rather than pity us, be understanding when we have embarrassing flare-ups or we can’t do too much because we are in constant pain.
If you have an autoimmune, know you’re not alone. And even if you don’t suffer from an autoimmune disease, I would suggest at least educating yourself slightly on autoimmune diseases. Knowledge is power. Chances are, you know at least one person who has an autoimmune (people who know my family know at least three).
Having an autoimmune is not the end of the world, nor is it “gross” as so many people have told me. I try to find the positive in the situation – though it’s not ideal, it makes me unique and, no matter what, I’m beautiful to God, to my mom (as she reminded me as I wrote this article – thanks, mom!), and no matter what anyone else says, you are all beautiful to me. If you have an autoimmune disease, embrace your hot mess whether it’s inside or outside. If you don’t have an autoimmune disease, don’t be scared to embrace someone who does.
