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.

31 thoughts on “The humiliation of fatigue

  1. Another awesome entry filled with so many lessons for your audience. Thank you for the privilege, dear friend.

  2. Idiot. Your neighbour is just an idiot. I’m sorry, maybe he’s a kind of good-intentioned idiot, but an idiot all the same. Somewhere I read that the road to Hell is paved with good intentions. What he should have done is your gardenwork.

  3. I want to give your neighbor a gentle hit upside his head–and then have him do your yard work. I want to give you a hug–and then clean your house. I hope your day goes better! JoAnn

  4. Oh dear. You are so right and wise in your comments and I wish you didn’t have to encounter this situations. Your neighbour probably means well and he doesn’t even think of what’s behind what he is saying. As Laura said, you are giving us yet another lesson and making me realize how many times we don’t see outside the box.. Lots of love.

  5. Your neighbour is an idiot – especially because he knows what’s up with you. I’m sorry he hurt you like this with his ignorance. I admire you for not insulting him or being aggressive.

  6. Dear Knot, your neighbour patently does not know how sick you are. He is an idiot. I think his remarks come from ignorance and/or his own fear of cancer. Take no notice of him, honey bunny.

  7. Oh, lord…I hear ya, sister. I have suffered from cancer-related fatigue for over four years now & have blogged about it many, many times. People do NOT get it. People who should get, like doctors & clinicians & my colleagues at the homecare agency where I manage to work (now part-time) as a PT do not get it. Other cancer patients sometimes do not get it. We got it & get it. I wish I had a dollar for every time someone suggested I hire someone to do something around the house & yard. Because maybe then I could afford to hire someone. ‘Yeah?,’ I say when I’m in a really bad mood, ‘You going to pay for it? Because I’m broke, too.’ Oy. Hugs. If I win the lottery, I’ll share it with you. xoxo

  8. I’m sorry you faced this “insult, on top of injury.” I understand how you feel. I was surprised to be able to change sheets this week, usually I’m exhausted by taking a shower.

    If ignorance is bliss, your neighbour is a happy man. Do you wish we were still ignorant of life with cancer? I sometimes do.

  9. Never being much of a spotless house kind of woman, my neighbours don’t notice a big difference I’m sure. Maybe that’s a plus, because if one of my neighbours said something so idiotic to me, I don’t think I’d be as gracious as you. Sending you gentle virtual hugs… and if the moon is hiding for you today I can send you a photo of it full, give it your best howl… xoxo

  10. {{{{{hugs}}}}}, hugs, and hugs again – I live with my DH who has a chronic (terminal) illness and he too has chronic breathlessness and fatigue is kicking in – I call it an invisible handicap. The looks we get when we use an ‘accessible’ car park tell a story much like yours. May you experience the prescence of the Peace that passes understanding, and be able to abide there.
    Prayers and blessings
    Maxine

  11. know that i luv ya dear ((((((((((((( Knots)))))))))))))). know that a lot of us feel the same way about you. Know that some days the best i can do is just that Howl at the fricking Moon………

  12. i’m so sorry you had to be the brunt of such insensitivity. i hope that writing about it has helped heal the bruising that neighbor’s comment inflicted. and i hope if he reads your blog and the comments of support, he will be a bit more informed and maybe even apologize.

    this is a great post – and i know you have helped so many others dealing with the struggles both physical and emotional that profound fatigue imposes upon us. i hope all the responses gives you the reassurance – WE GET IT! WE’VE GOT IT, TOO, AND IT IS, INDEED, HUMILIATING AND DEBILITATING. rant as much as you want – we’re here for you!

  13. Dear Judgy Neighbor, Shut your mouth and help out! Too obvious? So thick. I have a yard full of weeds. Last season, some folks came and cleaned the up. I may have to try to hire someone this year to remove the fire hazard now they are all dried up. Actually, a sweet friend from church came and cleaned my bathroom yesterday! This was a rare occurrence for me. My own mother stopped helping because she didn’t like my son’s attitude about her “coaching” him how to “keep up” with things. No one really gets it. Maybe if it were a visible rash it wouldn’t just be seen as lazy. *looking for a Sharpie marker…

  14. I don’t have cancer but congestive heart failure (at the ripe old age of 48- and not the artery-clogged kind that can be fixed with a stent- just a defective ticker with nice, clean arteries) and a transplant is probably in my near future. I totally get the fatigue thing. I used to be the crazy chick mixing concrete and carrying huge landscaping stones, flinging them like I was flipping pancakes. Now I have days where I’m so wiped out that sitting upright is an effort. When I drop my kid off at practice and don’t get out of the car, don’t assume I’m lazy. And people shouldn’t assume that just because I look ok means I’m ok. You never know what someone is suffering with health-wise. Maybe I should wear a sign that says “BAD TICKER.”

  15. Dear Knot: just discovered your blog thanks to Nancy of Nancy’s Point. I hear you LOUD and CLEAR and send you love. I know that particular fatigue only too well myself (I’ve had 3 separate cancers), unfortunately, as well as the accompanying frustration that so many people simply do not understand: the frustration to not be able to do what you used to be more than capable of doing, no matter how determined you are, no matter the strength of your will, no matter, no matter, no matter. How awful does it feel when *simply* showering feels like you climbed Mount Fuji three times in a row? How frustrating does it feel when the “simple” act of changing your sheets consumes all the energy you thought you ever had? And to top it off, the insensitive, “well meaning” remarks of happy and healthy friends and neighbors….Gah!! Obviously, your story touched a very, very sensitive nerve of my own…. Yes, howl, howl, howl.

  16. Wow wow wow!

    Thank you so much, each and all, for reading and commenting. This post must have really touched a nerve. It is the most-read post I’ve ever had, with the most comments.

    So many of you said it better than I did, so thank you.

    Most of all, thank you for the loving support. It was such a positive experience to read all of your comments this morning. You are the greatest people EVER. I’m just sorry we all have to be members of this stinking club.

    • It’s a stinkin’ club but, one we are all glad is live and well to support one another🙂 Especially since we all have silly neighbors no matter what part of the world.

  17. Some people feel they have the right to comment on everything, even when they know very little. What a presumptuous man – or, as others have said – what an idiot!
    Mind you – I’ll wager he’s like that about everything and everyone. I suppose at least you must be keeping things together enough that he doesn’t feel he has to make any special concessions to polite behaviour just for you!:-D

  18. 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.

  19. 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.

  20. 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!

  21. 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.🙂

  22. 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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