504158EF91EAA8A27A35DB2FC810D5BC

Because cancer.

Copyright: allika / 123RF Stock Photo Used with permission.

Copyright: allika / 123RF Stock Photo Used with permission.

Do not tell me how to feel!

For those who may not read through to the end, here is the take home: you do not get to tell me how to feel or what my attitude should be, no matter who you are.

Sure, it’s more comfortable for me and the people around me when I’m have a positive attitude, but that does not mean that I have to live “all bliss all the time” like some insane American cable television station. Being positive does not mean pretending that nothing is wrong because… cancer, people!

A young woman who, I think, just turned twenty-two posted this on her Facebook page: “That’s the thing about pain. It demands to be felt.” She knows what she is talking about, by the way.

It does no good to pretend that emotional pain does not exist. It does no good to pretend that it’s not there. The only way I’ve ever found to get through pain is to recognize it, sit with it, walk through it to the other side. Sometimes that process leaks out into the environment and then I don’t smile prettily at everyone around me. Sometimes I’m snotty and bitchy and generally not one of Jesus’ little sunbeams. Sorry about that, but… cancer, people!

Here’s another news flash. A positive, determined attitude will not cure cancer, no matter what the popular media tell you. The following quotations are from the American Cancer Society:

In 2010, the largest and best-designed scientific study to date was published. It looked at nearly 60,000 people, who were followed over time for a minimum of 30 years. This careful study controlled for smoking, alcohol use, and other known cancer risk factors. The study showed no link between personality and overall cancer risk. There was also no link between personality traits and cancer survival.

[…]

To learn more about attitude and survival, researchers looked at the emotional well-being of more than 1,000 patients with head and neck cancer to find out whether it affected survival. Over time, those who scored high on emotional well-being showed no differences in cancer growth or length of life when compared with those with low scores. Based on what we know now about how cancer starts and grows, there’s no reason to believe that emotions can cause cancer or help it grow.

Read the whole article here.

The following is from the same source, the American Cancer Society, and is even more explicit:

Cancer can’t be controlled by a positive attitude.

Cancer is not caused by a person’s negative attitude nor is it made worse by a person’s thoughts. You might be better able to manage your life and cancer treatment when you are able to look at things in a positive light, but that’s not always possible either. It’s much healthier to admit that having cancer can make you and your loved ones feel sad. Once you can admit that reality, it is easier to get on with your life, whether that life is measured in days, months, or years. Some of those days will be good, some will be not so great. Most of us know that this is the natural course of life anyway – with or without cancer.

People may tell you about studies that show that patients with a positive attitude live longer. These studies often offer anecdotal evidence (people’s stories) based on too few patients and questionable research methods. No solid, well-accepted research has shown that a patient’s attitude has anything to do with whether the person will live or die. There are patients who live longer than they are expected to, but researchers do not know why. If they did, they could certainly use that information to try to help many people. So don’t let the positive attitude myths stop you from telling your loved ones or your cancer team how you feel. People with positive attitudes still die from cancer. People with negative attitudes often live a normal lifespan despite their cancer. Everyone gets through cancer in their own way.

Full article is here.

So. Of course it is nicer for everyone to pretend that we are all just happily trekking along together and that the cancer thing is trailing along in the shadows at the side of the road. Most of you can do that. I cannot. Other people who have cancer cannot do that. For us cancer is right there, sitting on our shoulders. Sometimes it rides along quietly, but at other times it cackles and jeers and hoots and mocks and kicks at our back and sides. That is not to say our life is “all cancer all the time” because it’s not. But it is never cancer free.

So you do not get to tell us how to feel. You do not get to tell us that our attitude will make us better, because it will not. You do not get to tell us that our attitude will help us live longer, because it will not. If you choose not to walk alongside us, I do understand. I certainly did not choose this for myself, and I don’t expect you to take it on yourself, either.

But if you do, if you place yourself on the road as someone who cares, as someone who is willing to support someone like me, may you be abundantly blessed. Just please do not expect me to be a sunshine-and-rainbows girl all the time… because cancer.

 

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46 Responses

  1. Diane says:

    Love love love your attitude!!! Go get ’em tiger! Not sure what wound you up but, your defensive approach to not telling a cancer patient how to feel tells me someone said something to you that drove this or to someone else and it has flared your nostrils. Made you smile 🙂 ~D

    • Knot Telling says:

      Yes, Diane; a couple of people really got under my skin today. If you liked this post, you would have LOVED the one I didn’t publish. I bet you didn’t know I knew all those words!

  2. Carolyn says:

    Oh, honey! Someone recently sent me her judgements and false accusations because apparently any negative attitude on the part of a terminally ill cancer patient was just too depressing for her to deal with. Because she has chosen to be positive, strictly. Oh, I have so much more to say. Maybe I’ll write a post too. I love you.

  3. cherrypipes says:

    dear (((((((((((Knots))))))))))) i trudge with you as best i can………prayers and hugs and smoochies from Texas

  4. Thanks for this post. You hit the nail on the head. Although my cancer was found early and my prognosis is excellent, it’s still cancer!

    I actually had a very dear friend tell me while I was dealing with some significant side effects that it may be mental and I basically just a needed a more positive attitude and I’d feel better. That statement really hurt.

    There also appears to be a prevailing sentiment that prostate cancer isn’t really serious. Hello! Take a look at the stats. While it normally doesn’t strike men in their “prime of life”, it’s still deadly. Additionally, it isn’t just an old man’s disease. Another false assumption.

    Thanks again and thanks for letting me rant. Hugs to you.

    • Knot Telling says:

      Rant on, my friend!

      People treat breast cancer like that, too. “The good cancer,” they say. Grrrr.

      I’m sorry your friend hurt you. I think we’ve all been through that. 🙁

  5. Elaine says:

    Yes. Yes. Yes. Absolutely. No one, and i mean no one can tell you how to/what to feel.

  6. Shari Larsen says:

    I LOVE what you wrote! Once again, you put into words so much of what I am feeling, but I am not eloquent enough to express.

    As someone living with MBC, I really hate that “P” word, and I really hate being told that I am “positive” just because I am out there living my life as normally as I can despite the cancer. I’ve also heard people say that “so and so had cancer, but they died because they just gave up.” I’ve had people tell me that I’m still here because of my attitude; no, I am still here because all the drugs I have been on, and am still on, have slowed down the cancer and so far have kept it from spreading from my bones to an organ.

    I also hate being told “not to worry” and “you will be fine” whenever I have scans. That makes me feel like my fears are unreasonable. I know people mean well when they say those things, but to me, it feel dismissive of my feelings. I’ve lived with MBC for 7 years now, and I’ve had my share of bad scans, so it’s not like I am being unreasonable.

    Thank you again for sharing your thoughts, from someone who is not always a “sunbeam” either! Love you!

  7. Tim says:

    Well said, I’m sorry that you have clearly had cause to point this out! I’m shocked that someone would have the temerity to do that. You wouldn’t be human if you didn’t rant and rail from time to time – I’d be more worried if you didn’t!

    Was this attitude from someone you know face to face, or on the internet? I ask because we’re all bombarded on line by stupid platitudinous memes that tell us effectively that anything is possible and perhaps some people have come to believe this wishful thinking – or at least started to believe it is normal behaviour to propagate such words when interacting on line.

    • Knot Telling says:

      Thanks very much, Tim. I see on Facebook that you’ve caught up with events by now.

  8. Suzanne Rose says:

    EXCELLENT, Claire. I feel every single word of thi from the depths of my heart to the pain of my bones. Sometimes it just sucks and I don’t care who knows! Thanks for your honesty and candor.

  9. Maxine D says:

    Hmm – maybe the naughty in me would love to read the ‘other’ blog post ;-).
    Oh Knots, what an insensitive person to cause you to rant – I can well understand that you cannot be “happy happy joy joy” all the time – none of us are. Gentle cyber {{{{{{{hugs}}}}}}}.
    Prayers and blessings
    Maxine

    • Knot Telling says:

      Maxine, I don’t think you’d know some of the words in the “other” post! 😀

      Thanks so much for your support.

      • Maxine D says:

        Don’t bank on me not knowing those words 🙂 – I may love the Lord, but that does not deafen my ears. I do not live in a salubrious town, and the vocab here is very colourful if one cares to listen ;-).
        To pray for you and support you is no hardship my friend.
        Blessings and prayers
        Maxine

  10. Lisa says:

    You said it better than I ever could. Can I reblog this? I’d like to continue to spread this message.

    • Knot Telling says:

      I’d be honored if you reblog it. Please include a link to my blog, if you don’t mind. 🙂

  11. I love this post! It is stellar. You’ve expressed it all so well that I have nothing to add except a big fat YES!

  12. Melissa B says:

    THANK you! When I was first daignosed, I became so frustrated with people telling me that I was going to be ok, that I had to have a positive attitude, don’t cry, don’t be upset, that if I faced it positively, it would be just fine! I think that was almost as difficult as getting the diagnosis, I was not emotionally able to look on the bright side (I never really found that). I needed to deal with it in my own way, in my own time. I ended up not telling many people because I did not want to deal with the negativity.

    • Knot Telling says:

      Whatever you feel is right and proper. Period. End of paragraph. That goes for every person and in every situation. Feelings are the starting point. What we do from there depends on us.

      I’m sorry you had to go through this. I wonder if people “get it” that their insistence on being positive has a negative net result. I’m pretty sure they don’t, but that doesn’t make it any easier for us.

      Thanks so much for sharing this.

  13. Paula Sanders says:

    I am so glad you wrote this post Knot! I agree 100%. When I was going through cancer, some people wanted me to write my story and I didn’t want to. Now I know why. Because I am straight forward and I don’t sugar coat it. I’m sure they wanted to read a happy story of sunbeams and rainbows and that’s not how I felt, so that’s not what I would have written and I still wouldn’t. Cancer is no fun at all. They just have no idea!! Forgive them for they know not what they are saying. That’s all I can say. Great writing! !

    • Knot Telling says:

      Thank YOU, Paula. “Forgive for they know what they are saying.” Paula, that is a brilliant summary – thank you!

  14. JSM says:

    It’s a way of blaming the victim, isn’t it.
    Maintain that illusion of control. Even if it means total denial of self.
    We ARE here to make other people comfortable with our experience with cancer, aren’t we???!
    Way to tell it, so excellent and clear.

    • Knot Telling says:

      It does come out as blaming the victim, but I’m sure they don’t intend it to be like that.

      Control. Absolutely. I wrote about that a couple of years ago, in fact. You might be interested to look at that post: http://tellingknots.org/archives/239

      I love this: “We ARE here to make other people comfortable with our experience with cancer, aren’t we?” My fellow snark artist. 😉

      Thank you very much for commenting.

  15. Felix says:

    You are right my friend, I have never seen it that way … But hey I don’t have (or I don’t know 🙁 ) cancer, and despite I know that attitude does not cure cancer I used to think that it helps to bear it … or maybe just made me feel better to think it. Now that I read your post the message is clear non-cancer people feel better when cancer patient shows good mood; but it doesn’t help them.

    • Knot Telling says:

      Felix, thank you so very much for this comment. You are a gracious and humble man, and I am proud you are my friend.

  16. Catherine says:

    I hear that and relate!

  17. maesprose says:

    I love how you express things… of course you’re right. I’m hoping whoever ticked you off is either far away or set straight.

  18. oh, Knots,

    a big huge thank you for all you have expressed about the “P” word; sometimes I want to tell the knuckleheads who are neither a recent widow nor been diagnosed with cancer that I wish they could be in either (or both!) these shoes – THEN tell me the only way to go is %^#$’ing positive. I am so sorry for what someone said or posted that upset you – but, darling girl, look at how many of us love you, and so, so “get it”. I hope it has made you feel much better.

    much love and gratitude, my Friend,

    karen

  19. Hello,
    I’m guessing you probably know where I stand on this… Thanks for writing yet another honest, insightful and yes, opinionated post! Bravo!

  20. Elizabeth J. says:

    THANK YOU! Would love to read the one you did not publish (I know, I’ve journaled some stuff that is for my eyes only, so I understand.)
    I got sick enough of the “just be positive” stuff when I was going through treatment for stage 3, always from people who had not gone through it. (Some of the worst had been treated for stage 0 or 1, however, and thought I was deliberately choosing to go through harder longer treatments.) Now I am stage 4, I wonder what part of I will never get over this do they not understand?
    But sometimes, damage can be even worse than emotional pain. The head of HR at my now former employer was of the belief cancer can be cured by being positive. It took over a year for her to give me the paperwork for filing for disability. Each time I requested it, I explained stage 4 to her. She would always reply, “Just think positive and you can beat this. Other teachers have had cancer and come back to work.” It costs my family money, forced my daughter to have to work while student teaching, allowed medical bills to accumulate, and put my retirement at risk.
    So, I have some real grudges against the idea that attitude cures cancer.
    BTW – daughter graduated on time with honors despite having to work her senior year.

  21. Ann Marie says:

    This was a beautiful post. This is your cancer no one else’s so why should you deal with it any other way?? xo

  22. SnodV says:

    I came here via Stupid Dumb Breast Cancer – I have written a very similar post in the past. I hate the rainbow-and-unicorns crowd almost as much as I hate the bluberries-cure-cancer crowd.

  23. Cheryl Martin says:

    Thank you for saying how I am sure many of us feel. I am 14 years with 4 occurrences. To say I get a bit testy around scan time would be a understatement. How can we help but to get nervous…. REALLY PEOPLE???? Only those who have walked in our shoes understand our scanxiety, our fears, our relief, our attitude. Thanks again!!!

  1. 11 May, 2014

    […] not tell me what to feel” is Knot Telling‘s plea to those who think they know how she should be handling her […]

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