Electric Bill Shames This PF Patient — But She Gives It Right Back

Electric Bill Shames This PF Patient — But She Gives It Right Back

Just breathe, passionate help for the PF journey
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.

20 comments

  1. Yeah, I’ve had people move away from me in movie theaters because of the little “pssst” noise from my portable O2 concentrator. A couple weeks ago my wife and I were in a theater while the pre-show ads were showing. A woman a couple rows in front of us turned around and said, “What’s that noise?”. My wife explained that it was my oxygen. A minute later she got up and moved a few rows away (there were only 6 of us in the large room). It’s happened a few times. You can’t even hear it when the previews and movie start.

    • Hi Steve…I’ve had that happen at the theater too. The first time it was such a shock and felt so bad. You are right, you can’t hear it once the movie starts. I still enjoy going to the theaters because it is one of the few normal things I can still use while using supplemental oxygen. So sorry that’s happened to you several times. Just keep going! I will too my friend.

    • Mike says:

      When I go to see a movie and people don’t like, the fact I have oxygen, well I give them the one finger salute. Life is too short specially for people like us with this terminal illness.

  2. thomas waszkowski sr says:

    Yes the electric company is no friend of a copd patient. Yes I am on oxygen 24/7 and my first summer had some big electric bills they told me to go live with a family member. Be carefull of your bills with your air on and oxygen on

    • Hi Thomas, thanks so much for sharing your experience with the electric company. I can’t believe they told you to go live with another family member! Ugh! I appreciate your personal story, but am so sorry you had this experience. Take Good Care Thomas…

    • Diana Marcotte says:

      I sent them a nice but angry email explaining that it was bad enough our bill increased substantially once my husband started using not one, but two oxygen concentrators 24/7, and that we didn’t appreciate receiving both an email and a snail mail reminding us of just how much electricity we use …..especially since they refused to offer us some kind of discount. And my husband is also listed with them as using supplemental life-sustaining oxygen in case of power outages.

      • Way to go Diana…so glad you were able to share so clearly what it’s like to get these notices in the mail or via e-mail. I hope we can all raise awareness and cause a change. Blessings to you, Diana

    • Mike says:

      When I get notices from the electric company shaming me about my electric usage, I just don’t care. I try to live my life to the fullest among my family and friends. Negative things that won’t help my condition, I tend to ignore and discard.

  3. John Seymour says:

    Kim I am experiencing the same thing with National Grid. I have a 10k Solar system on my home and I am in the SMART user program. I was a part time oxygen user. In November I was placed on oxygen 24/7. I live in Massachusetts so in the months of Nov.-March the solar only helps a little. My Bill this month was $243. Last year without the concentrator running my winter bill never exceeded $100.

    • Hi John, so sorry you are dealing with this too. How wonderful that you are so active in saving energy wherever you can. It does take a lot of energy to keep our oxygen concentrators going. I appreciate you sharing your experience with us. Blessings to you.

  4. Patty Hunt says:

    Well that explains why my electric bill runs so much higher than my neighbors! I have my concentrator on 24/7 even when I leave the house, so it will be ready when I get home. I guess I will be turning it off now!

  5. Geoffrey Hewitt says:

    my electricity went out in a corrupt town in NJ while on oxygen so I had to go to the hospital for oxygen overnight because they had a generator . The hospital though on insurance billed me 200 dollars for the usage; I sent a note to the corrupt utility to explain why I should be reimbursed; they never answered; I called with no response from a multi
    billion dollar company; so happy I live in NC now my bills are cut in half

    • Geoffrey…what a horrible experience! I’m so glad you are living in NC now, and that your costs are cut in half. It’s hard to grasp how much we go through just to have oxygen to breathe and stay alive. Thanks so much for sharing your experience with us.

  6. Mary says:

    We get those stupid notices as well. Now that I am a widow and live alone I am the “neighbor from hell” who uses less electricity than anyone else! When family comes in the summer and we turn on a couple of window A/C units the amount goes up. The amount went down very low during the time I was away traveling! Yipe
    When my husband was on Oxygen of course our bill went up and the stupid notice showed us to be greedy consumers of electricity. As for the “Help” from the electric company in case of a power outage we were told to go to the local hospital emergency room! Big fat help that would have been if the power had gone out during a blizzard. They do not care at all. Fortunately the longest outage we had was just a couple of hours and we had a back-up portable canister.

  7. Mike Olsen says:

    Yes I just called my local Energy company and gave them a piece of my mind and they are removing me from the list , so I will never got one of these stupid notices again. I have IPF and as you know we are supposed to avoid stress at all costs , so thank you for sharing your article , there’s so many situations PF Warriors find themselves in that unnecessary, so this in one less hassle..

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