The humiliation of fatigue

534075_333017693444653_190895940_nOne of the neighbors around our central courtyard made some remarks the other day that caused me to feel terribly helpless and humiliated. He mentioned how he had heard how active I used to be, how well I kept my house and garden, how much work I did for the marginalized and weaker people in the community. “What happened,” he asked. “It’s not good for you to be so inactive. Just do a little at a time and you’ll get your strength back.”

My neighbor knows I have terminal cancer. He knows that my world has become very small. He knows how sick I am… but he doesn’t get it. He is one of the many people who see cancer fatigue but register it as laziness or depression or “playing the cancer card”.

Don’t they know how much I want to be active again?

Today I changed the linens on my bed. It took an hour and I had to take a rest before doing the last pillow because I was not only exhausted, but out of breath. This is not fun, people. I love a clean house, a spotlessly clean house. I can’t have it now because I have to depend on other people to do the heavy work for me – and most of it counts as heavy work for me now. For the pittance I can afford to pay, I cannot require that they clean to my standards, just to “regular clean house” standards.

Not only can I not expect to be completely pain free for the rest of my life in the physical sense, I can expect to have a certain degree of emotional pain, too. I’ve written at length about how I deal with feelings that I don’t like. It works. But sometimes I wish with every fiber of my being that I didn’t have to deal with all this.

“Why me,” cried the woman, in honest desperation.

“Why not,” came the reply.

I do my best not to spend my limited energy reserves on nonsense, not to waste time howling at the moon–except when a good old-fashioned howl is what I need to free myself so I can get up and keep going. Today is a howling at the moon kind of day.

And so, dear friend across the courtyard, this is what I want you to know. Fatigue is real, even though you cannot see its stigmata on my skin. I am frustrated enough that I cannot do everything I’d like to do, and humiliated enough at the state of my house and garden without you pointing it out to me. I am doing everything I can possibly do, and probably a little bit more than that.

Moreover, I do not have to justify myself to you any more than you have to explain  yourself to me. I know that you mean well and would never have intentionally hurt my feelings. But please just keep your mouth shut and your suggestions to yourself. Give thanks to God that you don’t know or completely understand what I am experiencing, and continue to be the friendly neighbor you have always been, respecting our mutual boundaries.

Thank you.

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31 Responses

  1. bethgainer says:

    What a poignant, authentic post! That person was an insensitive jerk. People not in the cancer world don’t get it. They simply don’t. They believe if you look good, you feel good, and that is so false. I’ve had cancer- and treatment-related fatigue and it’s a real pain; I looked great, so people were quite insensitive to me. No one should have to feel humiliated about fatigue. As Nancy said, just “howl away” when you need to.

  2. Tami Boehmer says:

    I agree; the proper response for the neighbor is to offer to help; not criticize! Sometimes my husband, who should know better, will respond when I say I’m tired, “why?” Because I’m on treatment! If you’re not bald, pale and emaciated sometimes even people closest to you can think everything’s OK. I think it’s a bit of denial on their part.

  3. Great post and so true. I too have Stage IV breast cancer and suffer from enormous fatigue. Even the people closest to me don’t get it. Because I don’t look “sick” as Tami Boehmer just described it (bald, pale and emaciated),people easily forget that I AM sick. I can easily sleep all day, but most people view that as merely slothful!

  4. Knot Telling says:

    Thanks again to everyone who took the time to comment.
    Sometimes I feel like making cards to hand out: “It’s cancer, not sloth!”
    You all make me feel so much better. Hugs and kisses to all. 🙂

  5. YAPCaB says:

    I keep trying to find the mix of meds and psychologist sessions to get back to where I was a little over a year ago, when I was diagnosed with stage IV cancer. Reading this post hit a raw nerve. I’ve never heard of cancer fatigue as you describe it, but it feels like what I have. I don’t know if that’s good or bad, but thank you anyway.

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