While I’m a newbie to the cancer world, I have been the mom to a kid with a disability for 14 years. This doesn’t make me any kind of expert – it only makes me wary and tired.
In the disability community, I have detected a weird undercurrent of competition. Whose kid is *more* disabled and requires more care? Whose kid has been in the PICU? Who has an invisible disability? A visible one? Governments also love to make funding decisions based on selectively-chosen diagnoses. Bureaucrats decide who needs support or respite or childcare, not families or people with disabilities themselves.
All this competition for dollars, compassion and care has fractured the disability community into tiny silos. When we are torn apart, we are weak.
The best people rise above this competition. I love when I connect with a mom about what we have in common (how awesome our kids are as well as struggles with schools, health care, government funding and society), not purely what our kids’ different diagnoses are. Aaron has much in common with kids with different syndromes/stuff going on with them than Down syndrome (and he smartly doesn’t label his friends based on their diagnoses). The same is true with cancer – I’ve been blessed to meet many folks in the chronic disease world the past few months who have been kind and supportive to me. They don’t have to have the exact same thing I do to offer empathy on topics like body image, pain or identity. Together we are all stronger.
After becoming a cancer patient, imagine my surprise that while breast cancer campaigns have done a lot to raise awareness, fundraising campaigns do not benefit me as a patient in any way. I received medical care at our cancer agency (at no direct cost to myself, thanks Tommy Douglas) and even pick up my prescription at the cancer pharmacy so it is covered by the hospital.
But any ‘extras’ I might have required for my mental, emotional or spiritual health come at a cost. These are available in the private sector and for those who either have insurance or can afford it. Such is our two-tiered Canadian health system.
There are other tiers in cancer as well. Have lung cancer? Expect constant questions if you smoked (and so what if you did?). Have skin cancer? Ditto the questions about tanning or sun exposure. Have any kind of cancer at all? Many snide remarks about your ‘unhealthy’ lifestyle will be slung your way.
I consider this dumping on people who are the most vulnerable – the ole ‘blame the patient’ phenomenon. This happens in the disability world too, with the dreaded: why didn’t you get prenatal testing question that is asked of families with children with Down syndrome. Isn’t just having cancer (or a baby with a disability) enough for a little bit of kindness? It feels like we are all competing for a finite amount of compassion in this messed up world.
Dig deeper and breast cancer has its own weird pecking order. Mastectomy (single or double) or partial mastectomy. Chemotherapy or no chemotherapy. Radiation or no radiation. Estrogen blockers or not. I didn’t have chemo and have felt that I don’t fit into the traditional world of breast cancer. One nurse said to me: ‘well, radiation isn’t as bad as chemo.’ Which I’m sure is true, but because I didn’t have chemo, radiation was indeed the worst thing that happened to me. It wasn’t a walk in the park at all. In fact, the first day I had radiation was one of the worst days of my life. But I’ve learned to bite my tongue because I know there are others who have been through much more taxing treatment.
This moves into prognosis too: NED? (No evidence of disease, the ‘survivors’) or mets (metastatic breast cancer, woefully ignored and underfunded)?
The only way to temper this strange competition in the health care world comes from wisdom I heard once from a spiritual care leader at the children’s hospital where I used to work.
She said: You have your story and other people have their stories. It is okay for these stories to be different.
Let’s embrace each other’s stories without tearing each other down. Let’s recognize that we have more in common than not and stop allowing governments, society and systems to fracture us apart. As a wise therapist once told me: you can’t lose if you don’t play the game. Opt out of comparison. If we make it safe for every patient and caregiver (and health professional, too) to tell their stories – even if their stories are different than ours – then all the things that separate us will magically disappear.