I’ve been musing on the many parallels between the government’s response to COVID and my own cancer experience.
I was diagnosed and treated for breast cancer five years ago. I've drawn these similarities based on anecdotal evidence. As always, I am unapologetically N = 1.
Inaccessible Testing or Diagnosis
I found a lump in my breast and had to hope that my family doctor would believe me, because I was too young (at age 47!) for a mammogram in my province.
There aren’t universal, easy to access tests for either COVID or cancer.
Patients have to rely on luck and relationships with their physicians in order to be believed.
It is 'Mild'
Many people told me, including clinicians: You are lucky to have early stage cancer and not need chemotherapy.
“Mild” COVID or cancer is not a thing. Both are life-threatening diseases.
Fatalism and Patient Blaming
People said to me a number of gems, including:
“Oh well, it is just your turn to get cancer!”
There is a new fatalism with COVID too – "oh well, everybody is going to get it." This is a clever tool used to excuse our governments' lack of action to prevent it.
I was also told - overtly and indirectly - “Maybe having cancer is your chance to get healthy!”
Can you say patient blaming? This is similar to governments’ trend of assigning personal responsibility to avoiding COVID. This is implied: “It is your own fault if you get COVID (or cancer) because you weren’t careful enough.”
Does the government consider there might be environmental reasons for getting cancer? No, the blame is shifted squarely on the shoulders of the individual, just like with COVID.
This patient blaming is also true for those who have co-morbidities and get COVID. There is a subtle and evil: "Oh, well you deserved it because you weren't healthy" undertone to the governments' PR response to people who have gotten sick or died of COVID.
I deeply feel for folks with Long COVID because the after-effects of cancer treatment are no joke, either. We also worry about our cancer recurring, just as folks are concerned about getting COVID again.
Many cancer clinicians said to me: Just get back to your old life after treatment! Well, I couldn’t, because my old life was gone. The same is true with those who have had COVID.
I still live with the physical after-effects of brutal cancer treatment (slash, poison, burn as we say) – scars, permanent tattoos, a chunk taken from my breast, lymphedema. I spend months and many dollars searching for treatment for lymphedema, which I finally found from a privately-funded physiotherapist. My breast surgeon didn’t believe lymphedema was even a thing.
Long COVID’s after-effects are also shrugged off by the health system. Or you have to fight hard to get into a Long COVID clinic, right when you have no energy to fight.
The worst part of cancer was what my patient experience during treatment did to my mental health. (Cancer also blew up extended family relationships, which did a number on me). There was scant mental health support in the public system, and I have been in private therapy since.
Harm to Mental Health
The mental health effects of living in a pandemic and/or having COVID are downplayed, dismissed and ignored. I felt like I had lost my mind for my life being turned upside down because I had cancer.
We need to stop denyimg what is right in front of us and start telling the truth: Dealing with a life-threatening illness SHOULD affect you deeply. And there SHOULD be support for you. If staring at your own mortality doesn’t affect you, I would suggest that you are living deeply in denial, which isn't a healthy place.
Cancer treatments, research and foundations are huge industries which employ a lot of people. I’m no conspiracy theorist but I will not be surprised (I am a lefty!) when the capitalists take the opportunity pop up ‘solutions’ to COVID that make them a hell of a lot of money.
The Vultures Swoop In
Cancer and COVID are both opportunities to make money off people’s suffering.
I lost a lot of friends and family when I was diagnosed with cancer. I half-joked - but cancer isn't contagious! - because people dropped me like a hot potato. People are afraid of their own mortality and become afraid of how your illness reflects on their own fears. Ditto with COVID - which is obviously worse because it actually is contagious.
There is a shunning in both the cancer and the COVID worlds, leading to isolation and loneliness. There is shame and guilt in cancer world - feeling like you should have done something to avoid cancer, and guilt for the pain you caused to your loved ones. I've been seeing similar themes pop up with Long COVID patients.
And this, my friends, is my lay-person's commentary on how our governments are trying to normalize COVID, just as they have done with cancer.
My hope is that cancer and COVID patients (and other folks with chronic conditions and disabilities) can see the similarities in their experiences and band together to spark the health care revolution that we all desperately need.
But many patients are sick and tired - and traumatized by the health system that is supposed to help us. We need health professionals to transform into allies to help us. We need more organized movements, like the Gathering of Kindness and The Patient Revolution. We can start by telling our stories.