My Experiences With My Cancer Support Systems Were Unfortunate

When you put your feelings out there in cancer support groups — be it in-person or virtual — you’re opening your ideas up to others’ interpretation, and some might not like what you have to say.

When one experiences a life-changing event and with that event comes trauma, uncertainty, pain and many questions, it's primal instinct to look toward others, whether it be family, friends, a therapist or a support group for comfort.

But what happens when those very people relate to you with angst, bullying, accusations or belittling? What makes that place or person you turned to for safety into a danger?

Years ago, when I was diagnosed with Hodgkin lymphoma, there was no internet and one rarely spoke about therapy or therapists. I was 11 at the time, so I pretty much relied on my parents to figure out how to treat me for emotional damage. The unfortunate situation was (and still is) that I had a mother who was prone to narcissistic behavioral patterns. I became the target for her own bitterness in her life, so it was hard to feel comforted by a person who had the compassion of a cold fish.

I was used to an angry parental figure who was demeaning, sarcastic and just generally angry. When we do not have the proper nurturing, even without a significant health event, we tend to find our own coping skills; sometimes they’re not very healthy ones. I developed obsessive-compulsive disorder (OCD) as a coping mechanism. If I had to worry about checking if lights were on and plugs were unplugged and if I touched something four times, I wouldn’t have to focus so much on a deadly cancer I was fighting to survive from, which is damn scary.

Later in life, when I would develop breast cancer at 25, a side effect from the heavy doses of radiation they used to treat my Hodgkin lymphoma, there were new avenues for me to tap into for help: support groups, therapists and social media. At first, the idea excited me to be around others who were going through everything I was. I could experience empathy instead of sympathy and bathe in the comradery of fighting together for life!

But after a few visits to the support group, I started to notice something: I was becoming more depressed. During the meetings, other women I would speak to who had been in the group longer seemed defensive and somewhat “clicky”.

If I offered an idea for alternative supplements and other things, I was doing to help myself, I was met with an inquisition. Suddenly I was on the chopping block. I was there for support, but it began to feel like I was making a deposition in a court case! Other times the women would want to talk about their situation in the most negative way and it scared me.

I decided to leave the group and counsel others on my own, my way, which was about looking toward life and happiness and continuing our journey the best way we could. 

I am a 38-year survivor and fall into the grouping of “long-term survivorship.” In this phase, I sometimes experience a more intense fear toward biopsies and scans because I have so many at this point in my life due to damages from prior radiation and chemotherapy. In addition to the terror from the cancer diagnosis, I work with the constant fear of doctors finding other problems.

I am involved in several Facebook groups which can be a wonderful asset, but the downside of this is you don’t see many of these people face to face, and you don't really know who you are speaking with. I have had more than one occasion where instead of hearing back from a comment or post in a positive way, I feel attacked or shamed or misinterpreted. It's a slippery slope of deciding to be your best self and lay there virtually naked, baring your emotional soul only to get smacked around because someone doesn't think what you say has merit, is correct or is misunderstood.  

In these instances, I choose to be selective. I left one group entirely because the people within it were making me feel awful and filling me with anxiety. In another group, which I love, I make sure that I either refrain from things that get too deep or remind readers that my thoughts are just that: mine. I have a right to my own perception.

What I needed to understand is that once I put it out into a forum, I leave it open to any interpretation and response that anyone deems is rational and relevant. Most times I will leave the deeper internal issues for a skilled therapist or my own journaling.

The key is to remember that I can only control my actions, I can't control other’s reactions, so I need to be careful who I lay it all “out on the line” for.

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