Since my breast cancer diagnosis and–48 hours later–the creation of this blog, I have sung the praises of social media. As my readership grew and my Twitter numbers blossomed, virtual roots that were planted started to flourish in a garden of unending support.
There are hundreds of organizations and affiliates that provide some level of support. For me, in the very first weeks of this experience I learned very useful information from Beyond the Shock and the (rather quiet) discussion board of the National Breast Cancer Foundation. Not only was it valuable to me in learning about the disease writ large, but also in reaching out to people I never knew for help. I remember my first question: “Do I ever wrap my head around this?” It also piqued my interest in this whole pink movement when someone signed their good wishes “Your sister in pink.” Warm intentions aside, I realized there was a pink movement and it could be, well, a little misguided.
The cool thing about social media is that you have people of all stripes that unite around a common cause. I am connected to, and with, advocates, patients, providers, and caregivers who all became conduits of knowledge, support, and empathy. But like anything else, you need to have the ability to absorb the best and filter out the bullshit. And bullshit is what I came across not twenty-four hours ago as the result of a question posed to the public on NBCF’s Q&A discussion board. These questions are tweeted out via @breastcancerQA and occasionally one piques my interest enough to click and see what’s going on. While sipping my tea and browsing through my Twitter feed the other night I saw this:
I immediately felt a pang of identity for I reflected back to the times my father refused to support my mother when she had problems at her job. She believed that she was facing age discrimination and he patently didn’t want to hear it and told her to suck it up. (I had a few words to say about that at the time, but I digress.) Point is, I needed to click on that and see what was going on. This was an emotionally abused woman crying out for help. I didn’t know what I could add to that conversation, but I made the mistake of going in.
My faith and hope in womankind was dashed when I read one of the first responses.
I want you to ponder that answer to a woman who has identified herself as one with stage iv disease. Roll them around in your head. Digest them. And now read it again.
“It might be harder for him than you.”
We talk about physicians who are dismissive, but rarely do we delve into the sad fact that partners and other women WITH BREAST CANCER can be foolishly dismissive in their words and actions. First of all, said husband is an asshole. He was probably an asshole before his wife got cancer. And he’s an asshole now. There’s probably little that can be done for a situation like this and, obviously, we know nothing when all is said and done. But honestly, why should a woman have to deal with that while they’re either vacationing in or moving permanently to Cancertown?
I think far too many women suffer in this space of emotional deprivation and we know all too little about it. It’s not like there are shelters for women who have breast cancer and aren’t being supported in the way they need to be. Many women have no access to the web in order to gain support. Many of them may know nothing about blogs or Twitter. They don’t have access to or cannot find a support group. They are essentially alone–not unlike women years ago when breast cancer was a “condition” of which you did not speak and men complained that their wives were less than the woman they married. The NBCF discussion boards are notorious (in my view) for the “my prayers are with you” crowd, so there wasn’t much to offer in the way of advice aside from “you need to talk to him” or “seek counseling” or “I’m praying for you” or “men are like this.” (I’m afraid my answer wasn’t helpful, incensed as I was by the words of Ms. X.) But that this woman reached out is enough to break my heart.
One woman commented with a central truth.
What can we do, really? My hope is that in reaching out this woman who is faced with such cold uncertainty and lives with a dismissive partner’s “tough love” will find the same valuable and indispensable virtual support that so many of us have found. Thing is, it won’t erase or even take the place of someone so central to your life who is not supportive. But perhaps it may provide some degree of help and solace.
According to the identifying information posted along with Ms. X’s vacuous advice, was information identifying her as having stage iiic cancer. My reply was more “I-can’t-believe-you-just-said-that” disbelief.
Ms. X’s egregious comment both dismissed the emotionally abusive behavior that was/is affecting this woman in a profound way by chalking it up to the ol’ patriarchal “that’s how most guys handle things,” but what is most egregious is how she’s marginalized the gravity of this woman’s diagnosis. Was it intentional? I doubt it. Cripes, she has stage iiic breast cancer herself. Look, what Ms. X and many more of us don’t often acknowledge is that it is empathy that you feel for your family, friends, and colleagues when you think they are having a harder time with your breast cancer than you. They are NOT having a harder time than you are. Let me clean off your glasses so you can see clearly: YOU are the one who experiences any one or more of these realities as the result of a diagnosis of breast cancer:
- One or both breasts amputated
- Lymph nodes removed and the associated pain and lymphedema
- Reconstructed breasts you can’t feel anymore
- Feelings of inadequacy, sexual disengagement
- Chemotherapy and its associated side effects
- The loss, in some cases, of employment because of the disease OR
- The difficulty in finding work after your treatment
- Experience of (in some cases) multiple surgeries
- Depression, anxiety, confusion, stress
- Long lasting side effects from the chemical warfare you were forced to endure: neuropathies, cognitive dysfunctions
- A period of mourning after treatment that can result in further depression and anxiety
- Guilt. Many women feel guilt that they didn’t catch it sooner, guilt they will leave their families long before they planned
- Fear of recurrence
- The unsettling unknown of that stage iv landscape
This is your reality and no one else can ever really be in your shoes. How many more women still have to see to their own needs, those of their kids, spouse, clean, make meals, and otherwise set the agenda for the household in addition to their breast cancer experience? This is not to say there are not supportive spouses out there–far from it–but this misguided response that someone else has it harder than you is yet one more example of women minimizing their experiences. Whether it be a successful career or a devastating disease, women always minimize their experiences. We’re not pretty enough, not fit enough, not successful enough, not strong enough, not . . . well, you get the idea.
Your disease sets off a number of emotions in the people around you: fear, concern, and sympathy to name but three. The people who love and befriend you face their own mortality when they see you. But they also love you and empathize with you. They want you to be well. They are saddened to see you assaulted with cancer. They may be devastated that they will not grow old with you. But they don’t have it harder than you do.
If you have breast cancer, NO ONE HAS IT HARDER THAN YOU.