Life Stories: We’re More Than Our Diagnosis
"I can get through anything, except maybe terminal illness. I have no idea how I would handle that." - Me to a friend, April 2015
Turns out, I handle it just fine.
How do I explain this without telling you who I am and what I have lived through? Seems I can’t. At least, I cannot do so authentically. And so, I recognize that I must allow myself to be vulnerable with you. Otherwise, you will never follow the connected dots between my stories, feelings and emotional triggers, and particular brand of insights.
Everyone has a story
We all have our own story; a series of experiences in life that can either make us or, sometimes, break us—temporarily or forever. In my case, the adversity I faced throughout my life is my superpower. From it grew my resilience, creativity, resourcefulness, and grit. Because of this, I would never trade my past even if I could. No regrets. Just gratitude.
In future articles, I will tell you about my struggles during early diagnostics and since my de novo metastatic breast cancer (MBC) diagnosis. I will also talk about the ways in which I have grown into the best version of myself over the last two years. Even reclaiming parts of me that went dormant for a spell. Today, though, I want to zero in on something said to me the day after my PET scan report indicated (an almost certain) Stage IV diagnosis.
Handling my MBC diagnosis
I was concerned about how I MIGHT handle this new diagnosis. So, proactively, I reached out to behavioral health right away. What happened with this on July 7, 2020, is another story in itself, but I will fast-forward to the day AFTER I found out I was Stage IV.
I had a video call with a psychiatrist who was very nice. He was a clinician prior to becoming a meds guy, and I found him pretty easy to talk to. But, like so many others I’ve come across since my cancer diagnosis, he was quick to diagnose… and with little factual basis.
About 10-20 minutes into our call, he said, "I peg you as a worrier."
I briefly paused before saying, "Worrier? No. I am a problem-solver."
I think of worry as passive and generally unproductive. Problem-solving, on the other hand, is strategic and actionable. Yup. My "worry" is mostly tactical. As a matter of fact, my sleepless nights are where I figure out how I will help non-profit organizations overcome barriers, too. It’s my personal norm and where my best solutions surface—along with well-considered game plans.
When he asked me about anxiety and depression, I stated that I have experienced both. But that it was always "situational." He never asked about the situations in which I experienced either. And yes, it matters—which is why this bugs me as a social worker.
He diagnosed me with both Generalized Anxiety and Adjustment Disorder, although he removed the second one from my chart after talking with me another time or two. Neither of these fit me—then or now. First off, there is nothing generalized about my anxiety. (The other diagnosis is just laughable if you know my story.) And, until you know what I have lived through or what I currently face, you don’t get to label my worry as "excessive." It’s the same as diagnosing a person with paranoia when someone is, in fact, following them or bugging their phone.
My personal story
I am a survivor of narcissistic parental abuse, and lifelong gaslighting—until I severed ties completely with all blood relatives in 2012. I score a 7 on the 10-point Adverse Childhood Experiences (ACE) scale. I was a victim of childhood medical neglect, which triggers me today when healthcare providers dismiss or ignore my needs. Additionally, I am a proud member of the LGBTQ+ community, raised in a deeply homophobic family and local culture.
You would never suspect this kind of background unless I told you, as I am remarkably healthy and even-keeled despite it all. No doubt, too, my ability to get to "okay" pretty quickly after diagnosis stems from successfully navigating difficult waters before. Lots of times. Out of necessity, I learned to devise creative solutions to challenges—especially in absence of resources. This shaped who I am, both as a non-profit leader and personally.
So, adversity served me well; it made me unbreakable. And I take such pride in this that I push back on any person or healthcare professional that diminishes my capacity and hard-earned strengths. Or those who form premature conclusions about who we are and where we’ve been. Our stories did not start with MBC. And we are far more than our diagnoses.
The night before
The night before I found out I have Stage IV Metastatic Breast Cancer, my landlords told me I had to move out of their basement in-law suite. In the middle of a pandemic (where I was not protected due to a month-to-month lease), and when I was only days away from starting what was then-supposed to be 5 months of chemo. I had no money, no support, no one to help me move, and nowhere to go. Do the progress notes of this psychiatrist reflect THIS? No. Of course, they don’t.
Given that I had already experienced homelessness starting in April of 2015, due to the aftermath of the 2008 economic crash, I considered my level of new "worry" to be fully appropriate. I was just getting back on my feet before the pandemic hit. And we haven’t even factored in that I just found out I am terminally ill.
I admit, my first month after being diagnosed with MBC was pretty rough. While my fight/flight response tends to run in the background more days than not, I have had fewer times in my life when I hit "freeze." I was definitely in freeze mode during the first few weeks.
I had trouble sleeping and eating, and doing basic things like applying for patient assistance with co-pays, etc. (I am now on Medicaid, which is another story entirely.) I continued talking with the psychiatrist because he was a constant for me early on. I knew I needed that in order to stay as "okay" as possible. But I never took the anti-depressants that he prescribed after our second call, and I only turned to a "rescue" anti-anxiety med when I had medical appointments. Haven’t needed those for more than a year now.
Talking about MBC
I started feeling a little more settled after chemo started, once I realized that I could take care of myself after infusions. Living alone brings up all kinds of extra challenges for those of us who don’t have physical help. And yes, I successfully navigated a move to my new home.
For all you newly-diagnosed folks, I want you to know that I cried a lot at first. And I found that this continued even after I could think and write about what I was experiencing without feeling emotional. Saying the words OUT LOUD, though, was another matter. So I made it a point to work on this by recording videos for Facebook friends about how I was faring. You could still hear that lump in my throat or quiver in my voice when I talked about lifespan. For a long time.
As I learned more about MBC and what it means for me… and us, I felt stronger and stronger. I also felt extremely hopeful for the first time since diagnosis. Still, it took a good 6 months for me to be able to talk about my cancer, verbally, without tearfulness. Now my tears are infrequent.
I knew at the 9-month mark that I was ready to move into patient advocacy. I started by being very open about my diagnosis on Twitter and looking for a place of belonging within MBC organizations. Then, on my 1-Year Cancerversary, I publicly “came out” again. This time about my MBC—and to everyone in my life that was connected with me through Facebook. That was followed by finally kicking to the curb friends who let me down in recent years, which was freeing… and a topic deserving of its own article.
Last week, I had a conversation with another patient advocate who is working with me on trying to address the needs of LGBTQ+ members of the MBC community. We talked on a video call a year ago, but neither of us remembered that right away. A clinician herself, Melinda remarked on my unmistakable growth since that time. Pointing out that I was VERY angry when we first met, she said, "You are a totally different person today."
She is absolutely right. Don’t get me wrong, I am still angry. But I am able to channel that anger into advocacy—as all effective, dynamic advocates do. I was already an experienced, professional advocate before my health diagnosis. This time it’s personal, though, and focused on my beloved MBC community.
This time, advocacy is personal
As I take the leap into this next chapter of my life, please know I am here for you. I vow to quickly find, sharpen, and harness my unique patient voice as I speak to healthcare providers, researchers, and others about what we face and need as a community.
I can’t tell you how long it will take or how well you will eventually cope with your diagnosis—and your treatment. Everyone is different. And we all have our own life stories. But you are more than your diagnosis, and I hope you always remember that. As best you can, don’t forget to actually live when living with MBC.
You are stronger than you know. And you, too, can handle this.
Do you have a safe space where others understand what you are going through?