Do Patient Advocates Need A Special Type of Support?
This article is for those of us who volunteer nearly full time as patient advocates while we are facing our own advanced breast cancer, or to anyone who is considering joining what I will call immersive advocacy. It’s the type of advocacy that is more than sharing social media posts, attending an event, or asking for birthday donations (even though these types of advocates are cherished and important). When I say immersive advocacy - I’m talking about those of us who dedicate our lives to advocate against the thing that is killing us by championing research through nonprofit leadership, reviewing grant proposals, organizing large scale events, exercising leadership to Congress, pharmaceutical companies, the media, and demanding change as representatives of the community at large. We run fundraising events, we travel around the country going to conferences and speaking or advising engagements, some of us start initiatives, grassroots campaigns, or our own nonprofits. More often than not in this space - you’ll see the same faces running in the same circles at one point or another.
Developing strong connections within the metastatic breast cancer community
The majority of the advocates at this level know each other - we build very strong and special bonds, much like those who have shared experiences of trauma or tragedy. We have platforms we are entrusted with not for fame or power (and if that’s what you’re only here for, please get out) - but because we really care about saving the lives of our family, friends, and ourselves. Conferences and charity fundraisers for us feel like class or even family reunions. We aren’t always meeting new people when we first gather together - we are running to our special close-knit support systems that have become like a makeshift family. We can be found hugging the ones who made it to the next event as we share a shot of tequila and remember those who have passed in between meetings.
There is a special bond, beauty, and yes - a fair share of drama (but let’s be honest, any group of a hundred or so women with strong personalities with ideas of how to get their missions done are going to butt heads from time to time). It doesn’t mean we don’t respect the hell out of each other's work and cheer when someone makes a stride that helps us all, or cries when one of us is stolen by this disease. The advocacy community is a tight-knit community outside the world of Facebook support groups. We’re more than friends, more than just colleagues - we are what happens when both worlds work towards a common goal to save lives. These women and men have become some of my BEST friends; but with this special bond also comes with it, its own special set of needs.
Grief when advocating and living with a terminal diagnosis
I think many advocates would agree that grief is one of the biggest downsides of advocating with other patients who are facing the same terminal diagnosis you’re going through - all types of grief. The grief that someone died, grief that you were the one who survived, shared grief, and mourning around scans resulting in progression. There’s grief in seeing your friends self-suffering from side effects or in pain, grief when someone takes their pain of their loved one dying out on you as the closest object - and now they want to break away from the ties and community you’ve built together. This grief we feel causes some advocates to burn out (some earlier than others by no fault of their own). I’ve seen advocates hold the hands of friends on hospice, providing respite for patients' family members at the end of life, and flying across the country to honor other advocates at funerals. It is cyclical, never resolving grief that may get better from time to time, but with the reality that 116 on average dying every day in the United States1 and approximately one person every 50 seconds worldwide2, we won’t be able to fully resolve grief until our friends quit dying. It’s why we work so hard and many of us continue to push through in spite of the grief - knowing without our work, the grief will only become compounded.
Yet, what does it look like when we go to seek help? We hear things like “you could quit any time”, “it was your choice to get into this”, “you’re just depressed” - NO, just no. A fair share of us are not just clinically depressed - we are living with unresolved grief with a complete lack of professional grief support. With some advocacy groups losing half of their group or training classes within a couple of years - where does that grief go? Is it medicated away (not to downplay if you do need meds - for some this may be necessary)? Is it suppressed to where we just don’t talk about it and move on till the next death, and the next until the weight becomes overbearing or our grief transforms to clinical depression? We do it far too much. We then ignore it or suppress our grief because our family or friends at home can’t understand how we’ve grown so close from what looks from the outside like “a bunch of people you know from the internet”? We do it all the time, but that doesn’t make it okay.
Support for metastatic breast cancer advocates
I am begging you, my advocate friends - seek help, we all need it. Grief is the price of love and loss, but this can all become too much. As immersive advocates, we are also immersing ourselves into a community of dying people - a community where between 70-80% will not see 5 years after their stage 4 diagnosis, and advocates are seeing this more than the average patient. We are not dealing with our grief and we are not healing the way we need to in order to fully move on. We need to be able to find healing so we can continue our missions in a healthy way.
All I know is we can’t keep going like we are currently going. Aside from dealing with our own MBC - advocates NEED specialized support for grief until hopefully one day - we will no longer need to grieve any more deaths from metastatic breast cancer.
How old were you when you were diagnosed with metastatic breast cancer?