Tell us about your experiences with weight management. Take our survey!

A woman sits in a hole, curled up and hides her head in shame. Feet of other people standing above are visible around her.

Guilt, Shame, and Apologies

Have you ever felt guilty for things you could not do because of lupus? How do you handle times that you look forward to but cannot attend because lupus rears its ugly head? Doesn't it sometimes feel shameful that 1 minute you are on top of the world, and the next you are laid out on the couch, unable to move? How many times have you had to apologize for having to cancel events, get-togethers, and activities because of lupus issues? I can’t even count on my hands how many times I've had to cancel when I really wanted to just be like the cool kids and go anyway.

Unpredictable lupus

Recently, I made plans to attend an event. I planned it about 3 months in advance. Excited to return to a sense of normalcy, I even paid for it. My body felt good, and I was in a great space mentally. But guess what? I couldn’t attend. Lupus reared its ugly head and grounded me. Money is wasted all because of the unpredictability of lupus.

Guilt for canceling plans

More plans were made without any follow-through. This seems to happen often with me. I feel well and get so excited, only to be shut down by the big bad wolf of lupus. The inconvenience that lupus imposes on my life can be overwhelming. It makes me wonder why I am making plans at all. What is the real purpose or planning if it is forever being canceled? The guilt that hits me when I have to cancel is hard to handle.

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

Often, the guilt wells up in me when I realize I can't attend. It's like an avalanche overtaking me while on the slopes. Ultimately covering and smothering me. A feeling that is so overwhelming that it creates doubt in me. Doubt if I can ever have a life as I had before. In addition, it creates a shame that is hard to shake.

Shame, shame, shame

The dictionary defines shame as a painful emotion caused by the consciousness of guilt. For me, it’s a harsh evaluation of myself that holds me hostage to negative thoughts. Above all, it is a feeling of embarrassment. Running on that emotion, I noticed it was harmful to my body, mind, and soul. It created more stress on my lupus journey. It’s a harsh reality to deal with as I try to explain and apologize for cancellations or ghosting.

Apologizing often repeats the guilt-shame cycle

Trying to explain why you were out dancing one night and laid out the next day is almost impossible. Since lupus is not seen by others clearly, they can misunderstand cancellations. I find myself apologizing more often than I probably need to. In all honesty, as I say sorry, I feel sorry for myself. All the guilt, shame, sadness, and anger are repeated. I’ve had to learn to respond to my own emotions differently.

Coping with feelings of guilt and shame

To begin lifting these heavy feelings, I had to develop coping skills. I’ve had many of these skills implanted in me but had to put them into practice in this situation.

1. I allowed myself to be vulnerable in those moments

I stopped avoiding it and being angry with it. This was one of the hardest things for me to do. Ultimately, my vulnerability helped me deal with it fully.

2. I honored, accepted, and addressed the guilt and shame

Why was I feeling guilty for something I had no control over? I couldn’t hide and push it away because it would grow. In short, I felt I had to stop punishing myself for things I felt I did wrong.

3. I wrote and recited affirmations to help me change my response

Affirmations that assured me the issues I was dealing with were not my fault. To tell the truth, I tried to trick my brain. In order to not fall into a funk, I had to work to condition my brain not to focus on the guilt and shame that wasn’t warranted.

4. I made the decision to LET IT GO

After honoring my emotions, allowing them to circulate, and then deciding to deal with them head-on, I could think clearer. As a result, I could understand the unpredictability of my lupus itself. This, in turn, helped me to stop apologizing for the issues lupus brings to my life.

Explaining is hard but necessary

Dealing with having to cancel plans due to lupus issues is hard. Trying to explain it to people who will never really understand is even harder. I had to learn how to make the feelings work for me instead of against me. It’s never a long process. It is a process that is constantly revamped, revised, and necessary to deal with heavy feelings.

Do you deal with guilt and shame on your lupus journey? Let me know how you handle it in the comments.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.