Patient Advocacy: The ugly reality of organizational and individual bullies

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“The wisdom of this culture comes from the sick people in this culture not the rich people.”

Dr. Rachel Naomi Remen in conversation with Krista Tippet from the podcast OnBeing.

No easy words come when a person you’ve been close to, even virtually, enters hospice, or worse, receives the news that medicine has no more to offer them and to go and make sure their affairs are in order. Those are words none of us with terminal cancer want to hear, but we know one day in the future we won’t be able to outrun the disease any longer.

On social media it’s very hard to hit the “like” or “heart” button for an announcement of such bad news. I read the posts several times. I hear what they say. In attempt to carry on a public conversation about what’s normally very private I try to respond with kindness and empathy.

There’s a significance to showing someone you understand what they’ve communicated.

At any time a ghost might take the place of what human spirit spoke behind the screen, testifying to the fact that another person died from terminal cancer. My heart shatters into thousands of pieces. I spend hours in my office hidden away from the rest of the world grieving privately. Wondering about my own mortality and feeling morbid and selfish.

Wanted: Dead or Alive?

So what about my forays into patient advocacy work and why am I left feeling cynical?

I found myself isolated and left out of events and opportunities for not being the “hot topic” of the moment. Yet experiencing as much as I have learned in my 7th year with metastatic breast cancer I’d have thought it valuable to use in an advocacy role. I’m too old, not newsworthy, not the right demographic. I was literally told at 49 I was too old to be a writer for a magazine just starting up for the under 50 set. That was a big smack in the head.

When I did my year and a half as a patient advocate, I watched as opportunities well suited for my experience and expertise were given to women who had not a clue as to what pool they were swimming in and with whom. Those hurt. Even afterwards as an alumni I’m told “no thanks” pretty much before the next class even started. Well, okay then. Not the “it” of the moment.

So, even in patient advocacy don’t assume anything. Don’t assume you’ll be part of a group of women working together to make a better future for others.

I recall the Odd Couple’s famous scene and quote, “don’t assume anything it makes an ass out of you and me,” the coach underlines on a chalkboard after writing the word assume – “ass” “u” and “me” as he yells the line at the bewildered football team.

It was not for lack of desire to help. Now I feel more useful in small groups and in supporting individuals and small groups of people. That’s way more satisfying and without the community politics.

Before diagnosis and my subsequent retirement I would remind new employees coming into an organization I was hiring for, if you put two people in a room, you’ve got politics. Everyone is jockeying for position and accolades.

In cancer nonprofit organizations, accolades come from helping people in taking the necessary steps to get the help they need: those diagnosed with cancer at all stages and ages, on an individual or group basis.

Here I say there’s not enough to go around anywhere.

And accolades should not be directed to an individual because it shouldn’t matter who does what, only that the work gets done. If the intention of the organization is clear and defined, people come to get what they need: resources of all kinds including financial assistance, where to find cancer centers, how to get matched with clinical trials, workshops on how to talk to our doctors, navigating complex healthcare systems, finding appropriate support groups, dialing to reach a human being via help lines, and the list goes on.

No one, nor any single organization can do it all. Focus and success go hand in hand. Partnership with people and other groups is key to success. Alliances are created and if managed well, can work beautifully.

We’re all in the same sinking boat so it helps if we all bail in unison not have one or two people dumping buckets of water back inside. It’s a zero sum game of mass proportions with a high price to pay.

Some of us benefit from the medications that have come from years of clinical trials. For me it’s the people who participated in them who also deserve the accolades for risking their lives for the rest of ours.

And the clinical trials are difficult to locate. Just getting over the hurdles for acceptance can disappoint even the most optimistic of spirits. Don’t forget, in many cases some of us may not be able to afford clinical trials. Yes, the medication may be free, but the travel and lodging and food are not usually covered – if there’s a stipend it’s never been enough to cover just the basic costs of living. It has to come out of pocket or begged for through a “go fund me” or other personal fundraising site.

These reasons are why I find helping someone personally is impactful and satisfying to me.

Yet when the bullying and the bullshit seem to have taken the joy of advocacy work and hidden it somewhere I can’t locate. Have you noticed the “mean girl” phenomenon of social media recently when people are called to task to prove they have MBC for instance?

That’s disheartening and tasteless. If someone flat out lies about having cancer or lies by omission by not saying they do not have stage 4 cancer but playing in the deep end of the pool shame on them. But I guarantee eventually it will be called out as they cannot answer the hard questions we all know come with a terminal diagnosis.

Just. Shut. Up.

Granted there’s residual pain and damage from an early stage cancer diagnoses, including PTSD, uncertainty of the future, financial problems, and fear that she will be diagnosed with secondary breast cancer, and so on. But facing death square in the face every day speaks a different language and brings up emotions that reflect terminal illness and the glaringly different medical care associated with it. It’s evident. No need to waste time – simply ignoring it is enough to send a person a message.

No one deserves the title of sheriff of the self proclaimed Cancer Police of Terminal Diagnosis City, Anywhere, On Earth.

Leave these people alone and focus on yourself. You’ve got other problems that require help beyond your cancer. So just shut up.

*(Thank you to Rudy Fischmann for correcting my ever worsening chemo brain on now long term recall and whence the quote and scene I recall as if it were last week but not the source; it takes a village to ensure we don’t make idiots of ourselves at times.)

The Lowdown on Startups

Bullying and advocacy don’t mix

There’s a broader affect of bullying and unwillingness to cooperate.

Recently I’ve noted breast cancer nonprofit groups have started up. Is there no way to bring ideas to the established advocacy and other organizations?

I’m willing to bet that in some cases people tried and got ignored or rejected too many times. If your passion is to serve the community then by all means do it. I do it, but I’m very quiet about it and do my service on a small and effective scale. Works for me and I don’t need money to do what I do. I simply trained to do it, was mentored and I’m still doing it getting as much out of it as I put into it. I offered to work with others in organizations and do work with the organization with which I trained to do healing circles. I now cohost a writing circle and will cohost a cancer circle come mid October.

I will continue my MBC healing circle outside of the organization indefinitely. It’s been a blessing to me and I love the women with whom I meet on Zoom every other week. It works. Period. No money required no back up needed just the desire and the time.

However, I needn’t have started a non profit to do advocacy work on a small scale. Others think differently for various reasons I can’t explain. I’ve reached out to one who could not find time to meet with me until November. I think I can rain check that one. There’s an unspoken message in putting me off for four months. No one with MBC is that busy. Sorry.

Yet the many non profits, advocacy organizations, online closed groups, Twitter hashtag feeds, and so on are confusing, cause conflict and shows an unwillingness for collaboration to serve the same population.

Perhaps there’s a way to work with preexisting foundations. We don’t know exactly how many people are living with dying. How many the SEER database finally counts to include secondary and not just de novo MBC diagnosed is still a mystery.

That I believe was the hard work of patients and advocates raising their voices to be counted and a huge win so that perhaps more dollars are diverted to MBC for research and development.

Collaboration. Try it sometime. It’s not going to take any glory from those who require it for their own egos and to soothe their aching insecurities.

Winners and Losers

Not only is it hard to “like” a post about someone dying, it’s also very hard to “like” certain posts and tweets on social networks of those striving for personal accolades.

The accolades in the nonprofit world should come from saving lives through raising money and awareness and for making the necessary strides to reach common goals. If there’s a trophy to hand out should it go to an individual? Sometimes for extraordinary reasons, but it stands to reason it should not matter who but what impact was made.

The reward is in the action itself, since benefits impact the very same individual who worked to drive the results.

The benefit is the reward, the reward is the benefit.

We’re all in the same sinking, stinking stage four boat together. Some of us have the luck of living with a high quality of life for a longer time than the statistics show.

Average life expectancy is 2.6 years. 26% will reach five years. And the numbers go drastically lower from that point on, with those with hormone receptor positive subtype living longer than triple negative, HER2+ or triple positive. Advocacy’s goal ultimately is to increase healthy years of life with a terminal diagnosis.

Yet the exclusionary organizers, the individual bullying, and the political bullshit have taken the joy of advocacy for me. The satisfaction from group activities hides underneath the layers of self promotion and the need for personal recognition by the few. The former satisfaction of advocacy is buried. Along with the bodies of the dead.

Perhaps giving over ourselves without pride can bring more ideas out into the community from the ready and willing capable creative people. We led lives prior to diagnosis and bring our professional lives of the past forward with extraordinary skills. We are lawyers, marketers, teachers, financiers, executive consultants, physicians, nurses, managers, worked in human resource and recruiting, IT and technical specialists, and even grant writers and lobbyists. I see a lot of wasted talent taken for granted by the very organizations who need these skills the most. We are social media experts, social workers, psychologists and psychiatrists, marriage and family counselors and we are still human beings with very specific and very difficult problems to solve.

It’s difficult to get the preexisting foundations to pay attention lately. To have recognition in our ever changing, always dying group of however many the SEER database finally counts seems to overshadow fresh thinking.

When life threatening or terminating disease creates the foundation for dialogue, sharing experiences with those who need no explanation or proof of our disease is equally as important as any single act of courage.

After reading Susan Rahn’s blog post https://stickit2stage4.com/2021/07/20/dear-advocacy-its-not-you-its-me/ Dear Advocacy, it’s not you it’s me, focuses on why she was leaving her nonprofit – my heart sunk.

“Advocacy has changed so much. There is less and less that feeling of: “how are WE going to fix this” and a whole lot more in-fighting, cattiness, and “you’re doing it wrong.” There are these pockets of small groups that want nothing to do with each other for the stupidest reasons. I can only imagine how it looks from the outside but from the inside, it feels like there is this constant unofficial fight to be the top dog of advocacy.”

Susan Rahn

I know to a degree how she feels and I know too many who are on the verge of burnout or calling it quits altogether. It’s sad to me that when you’ve dedicated yourself to helping others there never seems to be enough of yourself to go around. Worse to feel the results are as impactful as you’d set out.

I feel at times just sharing experiences is not enough and I can and should be able to do more. Unfortunately my cancer reminds me with a hard kick that I best back down and take it easy or else I’ll see the other side of my illness with great painful reminders. And I have had no idea how little I feel about what impact I have when I see marathoners, mountain climbers, hugely impactful advocacy individuals, podcasters, and I know I can do more.

But with time and chores being equal I’ll be lucky to get my laundry done some days. It’s a painful reminder that I’m one of many in the pool in which I’m trying to both swim in and be lifeguard of simultaneously is impossible.

But I’m grateful for every word I’m able to write and every poem I’m able to complete. Now if I could get a smidgen of the same confidence on my private life I’d really be getting somewhere but it’s as frightening as my health. The stress of all this at once could have an adverse effect as bad as a new metastasis and being on IV chemo – just the emotional equivalent. Life itself doesn’t stop because we have cancer and in some ways it gets harder because it’s all that and this too.

It’s enough of a comfort to know one thing.

I am not alone.

13 comments on “Patient Advocacy: The ugly reality of organizational and individual bullies”

  1. Hi Ilene,

    A sobering yet important read. I haven’t experienced any online bullying, and I don’t have experience with non profits either. Like you, I was saddened by Susan’s recent post and decision to pull back, regarding advocacy work. What works for me is sticking with my little blog. I’m comfortable with that advocacy role, be what it may.

    One thing I have noticed is that there’s a wee bit of what appears to be a Competition Olympics among some bloggers, for lack of a better phrase. I’ll just leave that right there.

    Thank you for writing so eloquently about this. Ditto to what Julia said. You’re one of the kindest souls in the cancer community. Keep writing, my friend.

    1. Thank you Nancy I’m so glad you’re my friend. It gives me no better sense of accomplishment than that. Period. No more larger scale advocacy but choosing very carefully those who affect people on a personal level, podcasts, healing circles service, and the blog. Expect a small poetry chap book after i return from a much needed getaway and yes I’ve noticed this strange blog-lympics of sorts with a layout of “look at me look at me” but it’s not about us. We write to benefit others with experience and teach one another through the love of what we do.

      So much for those dying young and having to deal with so much ugly defacement of their own physicality- you’re likely not as tuned in because the MBC space has the bulk of it so far as I can tell but please if you see of any – anyone – feel free to take it off public social network you’ve come to use as a court of concern not your own and bring it to your private blog where you can raise your opinions and not embarrass yourselves and others.

      I appreciate your writing so much Nancy. I hope someday I’ll get to give you and Julia and Jo and Marie and everyone big hugs in person. I’m working my way around to that beginning this week with Kristie and Abigail and Lori B. and two others you may or may not know but we’re getting together and having a girls week away. I can’t wait to board the plane Thursday for the red eye – I’ll be asleep right now and wake up to those amazing negative ions of the Atlantic where I grew up.

      That’s truth as best as it gets.

      Love you dearly,
      Ilene

  2. Thank you for calling out the things you did and also for being mindful of other people and also mentioning the organisations who do good. It’s always good to read your perspectives x

    1. Thank you so much 🥰 there’s too much good to even find the top of the iceberg. But then what lies beneath literally and figuratively do nothing to help buoy the rest sadly I wonder what sharks swim beneath the waters and wait to nip my feet. But we’ve cancer for contend with and important things to do not to call it, raise it and make sure it hurts as few of us as possible by the very fact of talking about it. That’s what my parents gave me was a voice and the right to use it WISELY and not to be mean no matter how much easier it can be at times – ignore it if you can’t be kind cruelty is the enemy of all life. It’s those jerks who swerve to hit something on a country road rather than slowing down and noticing the beauty.

  3. Hi Ilene, Thank you for sharing. You really are one of the most intelligent, nicest and talented people I have got to know since my (primary/early stage) diagnosis and the way you manage to cover so much in this post in such a measured way just proves this point! I have so much to learn from you. Sending love, Julia xxx

    1. I thank you for your praise of the post, Julia. It’s just the facts of the matter that Ive determined are important but by all means not exhaustive or inclusive of everyone. No one can tell anyone how to feel or how to get through a stage 4 cancer diagnosis. Some fade away into the background never seeking out the support available. Others read blog posts such as this quietly without comment – I dont want to scare those people off from the good organizations that are out there and the good people who have worked years building advocacy groups, fundraising, and support such as SHARE and Surviving Breast Cancer amongst others I’m sure I’m just not thinking of at the moment. There’s also commonweal.org and their Healing Circles Global organization that can become a safe haven for those who want a non-juudgemetal and confidential place to share what’s on their hearts.

      The landscape is not all bad.

    1. You are quite welcome and I hope this doesn’t take away all hope because it can be found if we dig just a layer deeper – see my above answer to Julia.

  4. Ilene, bravo on this post. Wow. I agree with everything you said and it NEEDED to be said. I’ve seen everything you have and like you am disappointed. I think you’ve touched on something really really important, can I reblog this with direct credit to your blog?

    1. Reblog away. I know that there’s nothing more disheartening than rejection but when it happens during the end of life and one is simply trying to be helpful by bringing their experiences and care to an ever changing population of people who are dying it’s even worse. Some of the bullying stories stick with me and make it difficult to keep my mouth shut though it’s certainly very painful for those who are on the other end. There’s a few people who do lie about their situation for attention- not saying outright they’re not stage 4 and taking the attention from those who need the support and access to financial and social support. Those few who I know don’t have mbc but play in the space are very obvious to me – the lack of personal knowledge and the truth of their situation does show but they also take advantage of the resources they shouldn’t be. I get upset but I show it by ignoring them. At one point someone in particular had to finally tweet they were not stage 4, but were stage 2 and suffering some lingering problems with neuropathy. Okay. I know there’s resources for them for ptsd and so on but please don’t insult me by taking advantage of the kindness of others whom you led to believe you are on the verge of death by omitting that fact. It makes me wonder how prevalent it is. I was called racist and I resented it because that was how I was responded to when I said I thought stage 4 cancer patients deserved to be put ahead of prison inmates for Covid vaccinations! Shockingly I get that the prison population is full of people of color but I still didn’t do anything wrong to put me on death row. Why should I be treated less than that? Nope. Don’t buy it. I bucked back and dropped it for fear of retaliation. It’s bullshit all of it. Neither was I too thrilled about a mean girl led start up offering something I’d been not only trained for but a part of the leadership of the actual organization that started them and does the training itself. I am grateful to be part of a true service focused organization that cares about its hosts and its participants alike. It’s a very hard thing to sit back and watch our ever dying population become the brunt of bullying and fear of being called racist or worse lying about their diagnosis. No one should have that stress on top of what we face daily. Thank you for reposting this and I appreciate your comment. I hold out hope this starts a conversation that needs to happen immediately.

      Much love,
      Ilene

      1. Ilene, I agree with you 100%, I think its emotional abuse when women allow other women to emotionally invest in them only to find the person is just pulling emotional heart strings and their dx is not nearly as serious as portrayed because of residual trauma following treatment they haven’t dealt with. A cancer dx is traumatic sure, but getting a Stage IV is literally a matter of facing mortality without any escape or reprieve. I’ve seen what you have and find it very unfortunate our already full plates are ever piling higher with fear not just of the cancer in us, but simply opening our mouths to speak. Hang in there sister, Samantha

        1. It’s terrible and takes precious resources from where they belong. And I won’t let fear of retribution or bullying take over what’s been a long time blog where I’ve openly shared my experiences so that others can benefit. Never ever going to happen!

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