I recently finished the audiobook of And The Band Played On (because chemo brain makes it hard for me to read a whole book, so I’ve turned to audiobooks). I took notes frequently as I was listening, because I kept being struck by how similar the experience of being a young woman with metastatic breast cancer is to the experience of having AIDS early on in the crisis. Here’s my list of similarities.
1. You have a lot of friends who die. Like, way more than someone of your age group should have. During the early years of the AIDS crisis, the gay community in particular was forced to watch many of its brightest young lights put out far too soon. It’s the same for us metsters. One that hit me especially hard this year was Seporah Raizer, whose writing for Huffington Post was so powerful and so honest. There’s this layer of sadness that comes with being part of a community so profoundly associated with death.
2. Despite watching all these friends die, you see nothing of your experience reflected on the evening news. Nobody seemed to think gay men’s deaths were a crisis in 1984, except for other gay men and a handful of doctors. There was very little on the news about AIDS in those days. And there’s very little news on metastatic breast cancer. There’s a lot of hopeful stories about people “beating” breast cancer, and we just don’t fit that narrative, so they leave us out.
3. Every ache and pain and weird symptom of any kind is cause for alarm, and you’re not really paranoid for worrying. Because that headache actually COULD be a sign that you’re dying.
4. The research community seems laser-focused on preventing your disease rather than treating the people who already have it. When AIDS was first being studied, there was a tremendous focus on the epidemiology of HIV, as one would expect when one is discussing a virus. Containing the spread of the virus was important to saving lives. But what often got lost in the focus on preventing the spread of HIV was saving the lives of the people who already had it. It was extremely difficult to get the research funding necessary to develop drugs to treat patients with HIV/AIDS. And it’s much the same for people with metastatic breast cancer. There’s so much focus on earlier detection of breast cancer, but once your breast cancer has metastasized, there’s a sense among too many in the medical community that your case is hopeless and thus not particularly interesting. I myself had an appointment with a doctor who I could tell 30 seconds into the appointment didn’t care about me, and I felt like it was because she knew my cancer is terminal. The man who discovered AZT once said, “If you declare the patient terminal and don’t do anything to treat him, he’ll always die.” This is how a terminal diagnosis becomes a self-fulfilling prophecy.
5. People tell those at risk of the disease not to worry their pretty little heads. Especially early in the AIDS crisis, there were a lot of folks who didn’t want to scare the gay community or people with hemophilia and thus discouraged the policy makers from taking steps that would have saved lives. We don’t warn people with early stage breast cancer that their cancer could metastasize years or even decades later, no matter what stage their cancer was at initial diagnosis, because we don’t want to scare them. Both of these reflect a paternistic attitude towards patients and those at risk of disease that I find particularly insulting, as well as harmful to the cause of saving lives.
6. Only by demanding that researchers save our lives will we have a shot at living a full lifespan. All the ribbons in the world won’t do it, be they red or pink. What will do it is turning the good feeling that those ribbons represent into research funding. With AIDS, it took celebrity faces like Elizabeth Taylor and direct action by ACT UP. MBC hasn’t found its celebrity yet, but at least we have MET UP now. (Any celebrities want to help us out?)
Add your comparisons between MBC and AIDS in the comments!
6 thoughts on “How being a young metster is like having AIDS in 1984”
I really hope that more funding becomes available for breast cancer treatments. My best friend just got diagnosed with breast cancer, and we aren’t very confident that the standard chemo and radiation treatments are going to beat it. Of course we’re hoping and praying, and trying so hard to be optimistic, but it just doesn’t look very good.
I have often thought about the parallel between AIDS in the early 80’s and lung cancer today. There is a lot of stigma and shame surrounding LC. Some patients with a smoking history feel ashamed or unworthy of better medical care. Medical professionals even are known to blame the patient and give poorer treatment. Many of us in the LC community are working hard to change the stereotypes and misperceptions, but it’s slow going. We are still drowned out by all the pink ribbon crap, which is so frustrating since I know it’s not even helping my fellow BC metsers. Sigh.
Anyway, thanks for another great post. I may write a similar one someday, as I had a cousin with AIDS and I see a lot of parallels in my situation (stage IV LC) and how he struggled to cope with also being told he had mere months to live, yet going on to live for years in the limbo that is “not cured, but feeling ok most of the time, but constantly in treatment and never knowing when the other shoe will drop” insanity.
Lisa recently posted…Gift Ideas for Someone With Cancer
Some AIDS patients in 1984 were subjected to narrow-minded morality judgements and discrimination–the cancer patient in 2015 generally does not experience this.
In the 1980s, some AIDS patients were refused treatment by some hospital employees who feared contracting the disease themselves. This does not happen to cancer patients in 2015.
The AIDS red ribbon was a collective but anonymous effort. We know that is NOT the case for the breast cancer ribbon. Per Wikipedia:
The Red Ribbon Project was created by the New York-based Visual AIDS Artists Caucus in 1991.
Remain anonymous as individuals and to credit the Visual AIDS Artists Caucus as a whole in the creation of the Red Ribbon Project, and not to list any individual as the creator of the Red Ribbon Project;
Keep the image copyright free, so that no individual or organization would profit from the use of the red ribbon;
The Red Ribbon should be used as a consciousness raising symbol, not as a commercial or trademark tool.
The AIDS movement had celebrity supporters early on: Elizabeth Taylor for example and actor Paul Michael-Glaser’s friends. I don’t know of a single celebrity who has championed Stage IV breast cancer as their personal cause. In some cases, the celebrities are using their own early-stage diagnosis essentially as their own springboard for attention and potential jobs.
Some AIDS patients didn’t disclose their disease for fear of losing work and/or friendships. Some people with Stage IV breast cancer also fear sharing their diagnosis may lead to discrimination–theoretically cancer patients can’t be discriminated against–but the reality is, if people know you are living with an incurable disease they can certainly find another reason not to hire you–or maintain your employment.
Katherine OBrien recently posted…MBCN Supports Metastatic Breast Cancer Researchers With Total Of $100,000 In Awards
This was certainly my experience while working in the AIDS world in the early 90s. No. 4 especially resonates. I spoke with my oncologist about it both yesterday and today and that’s why being hospitalized can be so bad for we metsters. No one care for us as much as our own people.
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