I've mentioned before that I blog for Cure, a magazine about cancer. I posted a new article today (8/6/24) but wanted to share it here too. Link
Understanding how I fit in matters to me but figuring out my identity in the cancer space is not always easy.
A lot of times in life, we can figure out who we want to be and what role we want to play. Do we want to be social? Funny? Athletic? Smart? Artistic? Talkative? Quiet? Healthy? Etc.
But then something hits you and you realize that you sometimes can’t decide who you are until you figure it out. Building the plane as we fly it, as we like to say.
I am being cryptic. Ok, here goes.
When I was diagnosed with renal clear cell carcinoma (kidney cancer) and metastatic pancreatic neuroendocrine tumors two years ago, I realized that for me, knowledge was power. I joined every support group I could find, read articles, subscribed to social media accounts, etc. My resources were limited because metastatic pancreatic neuroendocrine tumors are uncommon but there was some stuff out there. Having an uncommon cancer makes identity even harder.
As I started to attend more and more support groups, I started to feel slightly out of place. My first support group was filled with people who had my cancer type for over 15 years. They talked about what gel to put on your butt before you get an injection, but I hadn’t even been prescribed it yet. I was a newbie and hoped to discuss things like “How do I help my family deal with my cancer?” but I quickly learned that I wasn’t a fit with that group.
I tried several others and learned the same thing. My fits were never good and I got great connections from the groups, but not a lot of the kind of support that I needed. And I didn’t feel like I belonged.
Some groups were too sad for me (bad for my mental health), some had people who had been living with it for a while, some were too religious and most generally didn’t match my energy. So I pulled back from a lot of the groups.
I have met some amazing people in the groups, and I talk to them one-on-one or in small groups. Some of my closest friends are now people that I met in the groups. We even meet outside of the group setting.
So, I didn’t really know (nor do I now know) how I fit into my/the cancer world. I am very lightly symptomatic, and a lot of those around me aren’t doing as well as I am. I was actually once scolded in a group because I talked about how good I felt and how well I was doing.
But this led me to question myself. Am I an impostor (defined as not feeling as worthy as others)? Am I having impostor syndrome, where I feel like a fraud since I am not as sick as a lot of others? Do people care about my thoughts and opinions because I am a newbie and feel pretty good?
This all kind of threw me for a loop. I am a pretty confident guy and have a fairly large ego, so feeling like an outsider isn’t fun for me.
I work on this question a lot (am I an impostor and what’s my role or purpose in this community?) both by myself, with my therapist and with those close to me. I am not sure that I will ever have one answer, as I am learning that my role can shift over time.
For me, where I am today is that I care about individuals, not organizations. I want people to feel supported and helped; not alone. I have a sense of humor, and although I have a serious diagnosis, I can still laugh about a lot of things, including my cancer. I like adventures. All of these things help me define the role that I am beginning to carve out for myself. I want to help, I am patient first (as opposed to organization first), I can offer a different perspective, I will help or talk to anyone, and I want to bring in ways to help people who aren’t only pharmacologically based. I also want to help use my energy to let people know they are still capable of enjoying life and I want to use stories to make health care feel more personal.
As we all know, there isn’t only one way to deal with cancer, so I like to bring new perspectives (I am heavily involved in the integrative oncology world, I’m a marketing guy and a storyteller). My role is to try to help people, in whatever stage or phase they are in. If I can’t help them, I can connect them. I’ve met enough people now.
But the impostor thing is really tough. I have a serious diagnosis with two primary cancers, one being metastatic, but I feel pretty good. Do I have a right to talk when I am with people doing worse? Should I be quiet?
I guess where I am currently coming out is that I am who I am. I have what I have. I think what I think. I am no more of an impostor than anyone else.I don’t think there is a described role for me as I don’t think there is for anyone. I think the role I play is the role that I create for myself.
We are all individuals and so unique. As people, we are all different. We all have different diagnoses and conditions. We all have different personalities, needs and things and people that we care about.
Play the role you want to play, not the role you think you need to play. You are not an impostor. EVER. You are you and that’s as real as it gets.
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