When Shame Set in After My Autoimmune Disease Diagnosis

We often feel shame when we have done or said something that we later realize was not in good taste. We repeat the scenario over and over in our heads, cringing at our poor behavior and wishing we could somehow take it back. In most situations, if we seek redemption for our shame, we most likely find it. There are some situations where there is no redemption and shame seems to be a constant sidekick.

In the summer of 2016, I was diagnosed with a rare autoimmune disease called polymyositis. Even though for years I had felt rundown, I had no idea that such a thing coursed through my blood. Being diagnosed explained a lot of things that I was experiencing and even though the diagnoses was scary, I was relieved to know it wasn’t all in my head.

The thing about being diagnosed is that it doesn’t mean you are cured. Months passed and medications where prescribed, yet my condition didn’t improve to the point where I was able to live life like before. For me, that’s when the shame set in.

The shame came from many places. I was embarrassed that I didn’t go into remission as quickly as other people that I knew who had an autoimmune disease. I felt like my body was a rundown car that had stalled in the street for everyone to see. My shame spilled over to my relationships. Not being able to keep up on a walk with a friend or not having the brain power for coffee talk made me feel as though I was unworthy of companionship with anyone. The lack of energy made me question if maybe I was lazy or unmotivated and it added immensely to the shame. The way my physical appearance changed due to the medication made me so ashamed that I stopped going places unless I absolutely had to.

It has been about seven months since I was diagnosed and I wish I could say the shame has tapered off, but it really hasn’t. For some reason I am unable to convince myself that having a sickness is not something I did to myself and unlike a bad decision, it’s not something that I can rectify. I cannot force my body to respond better to treatment and I cannot get my body to go back to it’s original vigor. I know all this but still, I’m ashamed.

I wonder how many people with chronic illness find themselves dealing with the issue of shame. Am I alone in this or is it a common emotion? Whatever the answer is, I can only strive to understand my own pain and perhaps guide others through theirs.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Grandfailure

Find this story helpful? Share it with someone you care about.

Related to Polymyositis

Mariana with her cane.

Accepting My Pain and My Cane as a Young Woman With Fibromyalgia

I’ve had fibromyalgia for four, almost five years now. After a couple of months, or the first year, I started having debilitating symptoms. I was very stressed out, and it was a very cold, rainy season where I live. One day, when I got out of bed I felt like I couldn’t move my legs. They were [...]

I Can No Longer Live in Denial of My Crohn's Disease

“Denial ain’t just a river in Egypt!” This was something a teacher said in a psychology class. Yes, it’s dorky…but hey, it’s also true! You know, even after 20 years of having Crohn’s disease, sometimes I forget I have this chronic illness. Or what’s even more true is that sometimes I choose to forget this very [...]
woman carrying shopping bags and walking outside

When Adjusting to Illness Means No More Quick Trips to the Store

In the not so dim and distant past, “I’m just nipping out to the shops” meant just that. I could walk, reasonably swiftly, from my flat to the local convenience stores, post office, pharmacy and fast food outlets, all in between five and 10 minutes. Now, almost a decade since my diagnosis, I almost always take the [...]
girl sitting in grass with sun shining

8 Positive Things I've Learned After One Year With Ulcerative Colitis

As I reflect on my first year dealing with ulcerative colitis, I look at all the good and bad experiences I’ve had. Most of the time, while you go through a bad time in your life, you can hardly picture that something positive might come out of this. As the memories of last year are [...]