Am I really making a difference?

Advocacy, General 2 Minutes

Translating the world of living with a terminal illness to the world of the healthy is fraught with pitfalls and odd experiences. Language and details that I’m so used to now feels like a foreign language to healthy people. Yet, despite all of the talking and blogging and sharing articles about how to talk to someone who is dying, I still have inexplicable conversations.

For instance.

A few months ago, I wished someone a happy birthday or something on LinkedIn. This is a person who I knew generally, professionally, but not well personally.

Her response was …. “I hope you are well.”

I sat and looked at her message for a bit. I think I talk about living with a terminal diagnosis an awful lot. So much so that sometimes I do try to dial it back, to not constantly remind people that I’m dying. And then I realized, I haven’t gotten through to everyone.

So, I responded … “well? I’m dying of Stage IV metastatic breast cancer and I will never be well. Think about that in October and think before you pink.”

I was actually rather proud of myself because the first response I drafted in my head was not nice, full of profanity, and had lot of questions that were probably not fair to ask this person. I didn’t send that one. I tried to think hard about who this person is and how little she knows.

Her response? “I’m very sorry to hear that your health hasn’t gotten better.”

Wtf. Literally, wtf.

I just said that I’m terminal, that I’m dying and this is the response? I’m desperately raising money and pressuring people around me to give to the right places and dealing with a whole lot of pain and medication and doctors and she’s surprised that my health hasn’t gotten better?

Sometimes, when something like this happens, I wonder if I’m making any kind of difference with my advocacy. I meet people every day and talk about metastatic breast cancer, I’m used to working hard to educate people. But sometimes it feels like all I’m doing is talking to myself or the people who already know.

Clearly, I’m not as effective as I’d like to be.

So, dear readers, help me. Give me ideas. Tell me what else I could be doing.

I don’t want to just speak to the converted. What should I be doing differently??

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

34 thoughts on “Am I really making a difference?”

  1. First, yes, you are making a difference. I think we have to preach to the choir, so to speak, and let the ripples go out from there.
    I have had to explain my diagnosis to many people over the year. But the thing is unless you have lived it, or you are a medical professional (and then not even all of them truly), you will never understand. Someone can explain something to me numerous times and if I don’t have any reason to store that information, if it doesn’t really impact me personally, then I will not retain it (even less so now after living with metastatic breast cancer for so long).
    The general public and people we interact with less frequently will not retain the information about metastatic breast cancer until or unless it impacts them personally.
    Advocating can be a tiring and thankless job, but we need those voices to get the message to the ones that NEED to hear it –
    Keep using your voice. It is needed.

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  2. I second what builtaclan says. I will add that death is scary for those not facing it and most will avoid thinking about it if they can. Even getting through to those closest to us is hard. No one likes to think of themselves in our position where death is just around the corner.
    Without advocates and advocating, we’d still be an unknown entity instead of being a tiny (but growing) part of the whole breast cancer picture.
    I say keep advocating. It does make a difference.

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  3. Seconding what others have said: advocacy of any kind is terribly frustrating, because discernible impacts are often so small. Minuscule, even – as with your acquaintance. Change, almost all of the time for any of the things people work so hard on against massive obliviousness and indifference and long lists of other priorities, is more often incremental – glacial, even – than it is dramatic. But those early, minuscule, glacial advances are also indispensable.

    You do make a difference. You’ve made a difference to me. I didn’t know anything about any of this before I started following your blog.

    Plus there’s always this (from *Pirkei Avot*): “[Rabbi Tarfon] used to say: It is not your duty to finish the work, but neither are you at liberty to neglect it.” Which, since you don’t neglect it, may make you feel a little better.

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  4. I think the first two comments here are right. But some always cling to hope, they honestly wish for best, and yes they say things without thinking it through. Maybe in their minds we should hope for some medical breakthrough.

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    1. I hear this! I hope and pray for medical breakthroughs every day. I’m currently on medication that was just approved in June of THIS YEAR by the FDA. I have so much hope. I’m also a realist and I can’t ignore the facts. It’s frustrating at times! Love and light to you.

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  5. Ah, beware the dreaded advocate burn out. Sometimes we need to step back and focus on other things to give ourselves a break and a recharge. I try to practice patience which doesn’t come easily to me. It sometimes means repeatedly explaining to someone what MBC means. It also can seem contradictory since I haven’t had treatment in almost 4 years which means an added explanation of why I’m an anomaly. Don’t stop being you. The message gets out, however filtered.

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  6. Dear Abigail, I believe you are reaching many people who perhaps, while sympathetic, need a better understanding. There are probably some people who–maybe for the reasons others have suggested–just don’t want to absorb your message. And for folks like that, I don’t think there’s really anything you could say or do differently that would change that, at least not immediately. So please keep doing what you’re doing. You are making a difference, probably more than you can ever know.

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  7. Even though I may be considered among the “converted” I very strongly believe you are making a big difference. I understand and appreciate that you wish you could do even more, but as someone who has benefited greatly from knowing you a bit and following you I can attest unquestionably that you have made a big difference in my life and many others. I know that is probably not the answer you are looking for, but I hope that it does give you some degree of solace.

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    1. It does, my friend, it does. I just get frustrated. As I described to another friend, at times it feels as though I am screaming into something like a black hole. Friends like you remind me that it’s not as hopeless as it feels at times. Love and light to you.

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  9. There’s a quote from the book “One Day in the Life of Ivan Denisovich”: “How can you expect a man who’s warm to understand a man who’s cold?”

    This quote always pops into my mind in situations where people don’t seem to get it. To be honest, I have done this though: I kept asking my boss years ago how his mother-in-law was doing and he would remind me that she was terminal. Which I knew and understood but I guess I was hoping her last days would be just a little bit better for her than before. I kept hoping for something better I guess.

    I think people throw up walls with hard topics or things they don’t or won’t deal with. Anything from difficult work projects they dump on someone else to not accepting that one day their parents won’t be there (even if they’ve lived into their late eighties or nineties already).

    Perhaps you could write a blog on how we can better listen and respond to those with terminal illness. I think it’s something we can be taught if we’re receptive. I’m certainly willing to learn.

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  10. Your post definitely resonates with me as I often feel like I’m shouting from the rooftops but never reaching outside my fellow chronic illness warriors. It’s like we live in this bubble and we are trying our damndest to spread awareness but it’s always to one another. So I do two things. One, I post my silly doodles on Instagram, which have nothing to do with illness but because of that when I do spread awareness there it’s also to artists, who aren’t ill. And two, I add hashtags to things that aren’t illness related. Like today I tagged cooking and a couple people popped by that are healthy people who cook. So that’s all I’ve got. I never have the courage to say what I’d like (to people who say ridiculous things) and I’m really proud of you for doing so. Sending you hugs and strength 💗

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  12. The fact that you are here sharing tells me that you are already doing allot… Spend lots of time with family and friends and just try to have as much fun as you can, despite the pain, despite the medication, think of all the good things that you still have in your life and be happy… Keep sharing and stay strong… We have a family friend who’s going through this as well so I know it isn’t a simple or easy thing… Thanks for sharing again… It’s always good to read your posts…

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  13. Hi Abigail, I am learning so much from your blog.
    The positive take away from your frustrating encounter is perhaps doing a post on the,”right things to say”. Or “what not to say…”.
    I find these type of articles helpful and straight forward.
    Let this drive you further in your quest for educating others.
    More power to you👊

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  14. People who are healthy are just stupid when they open their mouth to take with someone who has cancer. I know that even being a survivor myself, I have said some stupid crap. And my Mother I thinks sometimes hates me because I am a survivor, and she is stage 4 pancreatic cancer (chemo lifer). She stays within the 4 walls of her house (other than treatment days) not living her extended life. And she doesn’t like visitors either. I live with survivor guilt. I got a pass so far…but care for a Mom who is stage 4 and a husband who does chemo for lymphoma which is progressing. My goal is to make memories with both, and the rest of the family. Not an easy task with someone who has given in to the fact that she is dying, but continues treatment lo live longer. I have tried many times to try and tell her there is a difference between living and being alive. But hearing it from me does no good with Mom. But my hubby, when he has just enough energy, he gets out and plays with the grandkids, visits family and friends and shows his love.

    You are making a difference. There are those of us that have an understanding of how you are. From a caregiver and survivor side, I see a woman who is living and trying to help those in the same situation. You keep being you.

    Happy thanksgiving.

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  15. I think the key here, and you said it, “This is a person who I knew generally, professionally, but not well personally.” is key, as alot of people distance themselves from people they work with. Ever seen a manager cry because they have to lay someone off? I havent, they will say, ‘yes its unfortunate’.
    So dont let it bother you what people say. If you help or save just one person you have done more than most.

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    1. I appreciate that perspective!! Yes, the people who know me well know better. I just was hoping that I’ve been more effective than I actually have been. Thank you for reading and commenting!!

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  16. You’re not doing anything wrong at all. It’s bigger than our mouths can chew and more than we can swallow. I think you do the very best you can to a population that resembles this:🙈🙉🙊
    It’s not what people want to know about, especially not former colleagues on LinkedIn. Keep it going, because there’s a person you’ll never know you’d helped who got a mammogram out of your words. Even if it’s out of fear of winding up with stage IV. It’s all we can do. So never stop talking. ❤️
    Ilene

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