COVID-19 & MBC: Our Concerns are Different than Healthy People
I've been living with stage IV metastatic breast cancer (MBC) for three (3) years and I've been immunocompromised for all of that time in one way or another. I'm fully aware that the reduction to my white blood cells during IV chemo (red devil) is different from the reduction on Ibrance or Piqray or Kisquali, but the bottom line is that my immune system has been affected in one way or another the entire time.
Other than the side effects of the medication I'm taking to keep me alive, I've not gotten sick during the time I've been living with MBC. How? Well, I think we're relatively smart and careful about the risks I take in "normal" life; at the same time, I also think that the complimentary care I've been getting to boost my natural immune system and to detox my organs from all the poison I've had injected has helped too.
Interactions and differing opinions about COVID-19
Yet, I've had so many weird conversations lately with people who are ostensibly healthy about COVID-19 and the pandemic and the remedies, including mask-wearing. The odd thing is that those conversations take one of two trajectories -- 1) the person I'm speaking with thinks I'm nuts for leaving my house at all; or 2) the person I'm speaking with thinks that the entire pandemic thing is a hoax and I'm over-exaggerating the risk to me and MBC community.
The first category of people are usually those who have tremendous anxiety about getting sick and germs and probably need to live in a bubble anyway. I'm all for being careful and limiting risk; at the same time, at some point, you have to use a little common sense and live your life. Having a terminal disease has taught me that.
The second category of people are harder to interact with. Wearing a mask and many other practical things everyone can do to remain safe and healthy have unfortunately become a political issue recently and that's hard to understand for someone in my position. Not only am I immunocompromised, but I also have two little boys (7 and 5) and we live with my parents, both of whom are over 65. We have so many vulnerable people in our household and we're taking all the steps we can to ensure safety, regardless of political affiliation.
I saw a discussion on Twitter the other day that really resonated with me. The author (@chronicpatient30) talked about an epiphany that she had recently in a session with her therapist about why so many healthy people seem to be taking an ostrich-like position of burying their heads in the sand.
She said ...
"All these people are speaking about this virus as a hypothetical scenario. They are naive to the reality of being hospitalized and facing their own mortality. They can't fully conceptualize it because they haven't experienced it. I have. Many disabled people have. Also, they are used to living in a body that doesn't let them down. A body that recovers easily from illness and probably doesn't get ill very often -- that is not my baseline assumption about my own disabled body because it's not been my experience at all. And lastly, they operate under an assumption that if they were to contract it, the medical professionals would do everything they can. They've not had traumatizing medical experiences like I have. They've not been ill for years and had doctors give zero shits. Their baseline assumption is that doctors can and will fix things. That again has not been my experience. Also goes without saying they don't have all the fears of being disabled in the pandemic and thus seen as expendable - an opinion legitimized by our government."
I don't know this author personally, but this explanation resonates with me like nothing else has. I've tried really hard to talk to healthy people about my experiences and efforts to stay healthy and how common sense remedies can be applied and utilized to reduce risk and reduce anxiety. The people in that first category, they are too wrapped up in their anxiety to see how extreme some of their actions are. The people in that second category, they write me off as nuts or fringe or whatever. Regardless, neither camp really listens to me.
And now I understand - they just really don't get it and, in some ways, they can't get it. None of them have lived in my shoes. None of them have heard those words, your cancer is incurable and you will die of this. None of them have been admitted to the hospital not knowing if they will actually leave it alive. None of them have experienced their bodies letting them down (to a certain extent, I think the age of the person matters here since those who are lucky to grow old have experienced this to some extent).
With this epiphany, I believe I can offer more empathy to the people around me. Wearing a mask and keeping ourselves and our neighbors safe isn't a political issue, it's a human issue. There are some people who don't get that and I honestly feel bad for them. For us, we will continue to shelter, to wipe everything down, to wear masks, and restrict my movements to home and doctor's offices when at all possible. We all have to keep ourselves safe first, especially those of us who know that we are not in the category of people who can be sure that they will weather this storm.
Do you have an MBC mentor/mentee?