Dear Advocacy, It’s Not You; It’s Me

At the end of last year, I made the difficult decision to stop all active advocacy in the Metastatic Community. In February, I officially resigned as METUP’s President. I haven’t disappeared completely, I am still available for individuals that need advice or help. I feel I will be more effective that way.

I threw myself into advocacy because I felt it was the right thing to do. My intention was to try to make meaningful change for those that may come after I’m gone. I diversified my activities. If it felt right, I would say yes when asked to take part in something new. I’m not someone who craves attention or wants any recognition. I’ve always preferred to be in the background; part of the scenery if you will. That didn’t always happen. I allowed myself to be out of my comfort zone a few times in group projects and while I am thankful for those experiences, I promise you, I hated every minute of it.

I, unfortunately, allowed my mental health to suffer because of my advocacy. I didn’t want the deaths of the men and women I knew to be in vain. I felt an overwhelming responsibility to keep going while my physical health was reasonably good. Meanwhile, I felt like a fraud. Who’s going to take me seriously when I’m still here after 8 yrs? I certainly don’t look sick, hell I wouldn’t even believe I had cancer so how can expect strangers to? Add a healthy dose of survivor guilt and top it off with a global pandemic that cuts us all off from socialization. I was low. I was unhappy.

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.

It all changed when Beth Caldwell died. She truly was the matriarch of the community. The sad thing is there is still so much more to be done: pharmaceutical price gouging, restructuring clinical trials, research disparity but the center of attention right now is the systematic discrediting of a fellow MBC patient. I can hear Beth’s voice asking: “Who’s life is that going to save?”

In the past, I have tried to help. I’ve taken it upon myself and tried to be a voice of reason. We are more powerful & effective when we all work together, aren’t we? The fire I once had in my belly was gone. It isn’t empowering to me anymore. I cannot be around people that have these other agendas that have nothing to do with advocacy while boasting how awesome they are. In my experience, if you have to keep repeating your perceived status, it’s not as awesome as you think and no more than what others have/are doing. Any respect you may have had is been decimated by your own words and actions.

I’ve given MBC advocacy all I had. I’m proud of all the things I have done and I don’t regret any of it. I made incredible friendships because of it. Now, it’s time for me to focus on my family and the people I love the most in this world. I am turning my attention to the future. More specifically my Granddaughter: Piper Olivia who will enter this world in January. I am not going to squander this amazing gift the universe has bestowed on our family.

Miss Minnie in charge of the gender reveal!

10 thoughts on “Dear Advocacy, It’s Not You; It’s Me

  1. It’s very hard to “like” this. I read it a couple of times. I hear you and I think I mentioned that in my short stints into patient advocacy with non profits I found myself isolated for not being the “hot topic” and i am in my 7th year. I help small groups of people and feel way more satisfied without the community politics – as I liked to tell people coming into any organization I was hiring for in my old life pre diagnosis you put two people in a room and you’ve got politics and jockeying for position and accolades. The accolades come from saving lives or taking steps to get there. Not to an individual because it shouldn’t matter. We’re all in the same sinking boat so it helps if we all bail in unison not have one or two people throwing water back in the boat. Some of us benefit from the medications that have come from years of clinical trials and to me it is those people who deserved the accolades for risking themselves for us. And of course helping someone personally can be mote helpful when the bottom line is that the bullying and the bullshit seem to have taken the joy of advocacy and stuck it somewhere I can’t locate. And now I find more groups being started by others as if there’s no way to bring ideas to the existing advocacy and non profits popping up – its confusing, causes conflict and shows lack of willingness to cooperate and perhaps give a little to get the preexisting foundations that have recognition in our ever changing always dying group of however many the SEER database finally counts to include secondary and not just de novo mbc people. 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 r&d then before.

    I’m glad you’re repositioning your energy to your family and your granddaughter- when it’s too late we can never make up for lost time. And time with those we love is never lost and the carries the most importance. It’s unlikely you’ll hear “I love you” from the current situation which I quietly entered and equally as quietly exited as I said to focus on activities that impact real individuals real time because time isn’t something we’ve got to lose.

  2. Susan thank you for your honesty and about the costs of advocacy – but most of all thank you for the incredible work you’ve done over the years as an MBC advocate. I personally have learned and been changed by reading your blog and I hope that you will continue in some way to keep us connected.

  3. Susan thank you for writing this you totally encapsulated everything I have been feeling and why I also have stood down, the constant need to be on social media to stay relevant in advocacy also was also another burden I’m glad to have unshackled myself from. Its toxic atmosphere combined with the cattiness you eloquently describe has led to high burn out. I hope you enjoy your retirement as much as I plan as you look forward to the joy of a new arrival in the family xx

  4. Hi Susan,

    Reading this makes me both happy and sad. I’m happy, of course, that you are focusing more on your own health and your family. And can I just say again, I’m so happy about the grandma news!

    I’m also sad because of what you wrote about advocacy these days. I haven’t experienced much of that negativity (wrong word, but can’t think what else to call it), but maybe that’s partly because I’ve always pretty much stuck to my own little niche – my blog. I have written about those walls though. So, I guess I know a bit about what you speak. And yes, Beth is dearly missed.

    Anyway, thank you for all you’ve done. Thank you for being you. Don’t get too quiet!

    Can’t wait to read more about whatever you’re doing. xo

  5. Thank you for all that you have done and you have helped me by educating me with what was truly important to all of us that have experienced cancer. Take a bow you deserve it

  6. Susan, thank you for all you have done. Your voice will be missed. And best of luck and health for future stuff, most especially the new grandie.

    David

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