I sat down to open my mail a few days ago and received what felt like a slap in the face. Shame hurts.
My local utility company sent me a report letting me know that I was using 161 percent more electricity than my neighbors. The utility shared this information in three different ways: in the percentage noted to the left, in a chart comparing my overuse to my “average” and “efficient” neighbors, and in dollar terms. Evidentially, I’ve spent $433 more in the last six months on electricity than my “efficient” neighbors.
Wow! I let a lot of things go, but this wasn’t going to be one of them.
I’m sure it is an automatically generated report that goes to everyone, but I wish the company had checked its records. I’m on file as being on oxygen 24/7, and am on a priority list of customers to get power restored quickly whenever there’s a power outage.
It struck me that the utility is using the age-old strategy of shame to try to change my behavior. If the company can make me feel bad enough for using too much electricity, and compare me to my neighbors who are “good,” maybe I’ll mend my ways.
This notice didn’t hurt me, or cause me to feel guilty for using more electricity than my neighbors who breathe just fine, and go to work during the day. I thought it was ridiculous, and it made me angry. It’s hard enough cope with all that goes into living with pulmonary fibrosis without having to deal with unnecessary pain and hassle. The reality is we are all doing the very best we can.
As you can see from this picture, I wrote a response, enlightening the company to the source of my need for additional electricity. “I don’t appreciate this notice. I am disabled with a terminal lung disease. I’m on oxygen 24/7 which takes electricity. I’m home all the time, as is my husband who cares for me. If possible, please drop me from this monthly report.”
I took these pictures to show my husband, and later decided to write a blog post about it. No doubt you’ve received shame or blame in some ways for your disease, or the needs you have because of it. If you are nodding “yes” I want you to know I’m so sorry this has happened to you.
It is hard to get a message filled with shame from someone, especially when it is out of the blue.
It can hit deeply, especially if you are feeling vulnerable and it’s unexpected. Sometimes people (or electricity companies) say or do things out of ignorance. It still hurts, but not as much as when those comments are made intentionally to hurt you. In the case of this letter, I’m sure no one thought how it would hurt someone in my situation. For all I know, the company may they think I’m growing “weed” in my back bedroom and using lots of electricity! That’s why I decided to send a response.
Just after I was diagnosed, and had just started using oxygen, a woman came up to me while I was shopping and said, “Seeing you makes me so glad I stopped smoking.” I felt shocked, angry and vulnerable because I was still so uncomfortable having to carry oxygen wherever I went. I said, “I’m using oxygen because I had breast cancer, and the chemo and radiation they gave me to treat my cancer ended up destroying my lungs and gave me a terminal lung disease. I have never smoked.” She was shocked by my answer and said she was sorry. “Thank you,” I replied. “You need to be more careful about what you say.”
I went out to my car and had a good cry.
When I experience shame, I try to allow myself to feel what I’m feeling. I try to tell myself the truth about the message I’ve received, rather than take in the shaming message as true. I then talk to myself with compassion about what just happened. For example, when I received the letter from the electricity company, I told myself, “I can’t believe they sent me a letter like that. I’m not doing anything wrong. In fact, I’m doing a good job caring for myself in the best ways I can. I’ll send a response and let it go. What a pain to have to deal with this.”
I’d love to hear from you, and hear about your experiences.
What type of shaming messages have you gotten about your disease? How do you cope with these messages and care for yourself? Please share this post with anyone you feel could benefit, or on social media.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.