I’ve written before about how illness isn’t a competition, specifically on how comparing cancers to less fatal illnesses is incredibly harmful. At that time, I’d lost an aunt-in-law to breast cancer. Seven years later and on the cusp of getting remarried, I’ve now lost a close friend and a father-in-law I didn’t get the chance to know.
Naturally, getting our society to shift its thinking about cancer is something that I’ve wanted to have happen for ages. It’s been weird to see people not make that shift. After all, cancer is something many of our lives have been touched by. Why wouldn’t we be able to change our thinking of cancer from one-and-done to seeing it as a chronic illness?
Before we dig into why cancer is a chronic illness, let’s get clear on what cancer actually is.
So, what exactly is cancer?
Instead of cooperating to protect us as a whole — like an ant in a colony — a cell receives instructions based on genes that have been corrupted. I’ll let Kurzgesagt explain.
As they explain in another video, cancer can be incredibly hard to beat.
But how is it a chronic illness?
Let’s take a look at just a few reasons.
Long-term illness & treatment
Lots of times, dealing with cancer means having to keep an eye on things for a really long time. Even after beating it, you still have to go through regular scans and invasive exams to make sure it doesn’t come back or spread.
Treatment can take a long time. For some, it can take literal decades on the never-ending rollercoaster of surgeries, chemo, radiation, etc. The main goal is to keep the disease under control, relieve any symptoms, and make sure the patient has the best quality of life possible.
Recurrence, risk, and additional health issues
Even if someone gets to the remission stage, cancer can come back. Not only is there a chance cancer can return — it often returns bigger and badder, as Kurzgesagt explained.
If you beat one type of cancer, you’re more likely to get another type of cancer later on. First, your cells know how to mutate and have the capability of evading cancer killers. On top of that, radiation and chemotherapy can cause mutations leading to leukemia later on.
Treatments can also increase risk of long-term damage, such as heart disease and damage, peripheral neuropathy, lymphedema, GI issues, and much, much more.
Quality of life impact
Screenings and treatments are getting better. More people are surviving cancer and doing so longer. But, lots of survivors still have issues from the disease and treatments — including rheumatic disease-like symptoms following immunotherapy.
During or following treatment, folks with cancer maybe have to change up their entire lives. From switching up their diet and hitting the gym to coping with stress and sticking to their meds, this can be an entire lifestyle change. Even after treatment’s done, they may have to make more changes to lower the chances of long-term effects.
And that doesn’t even touch on the emotional impact of cancer. These can include depression, survivor’s guilt, body image issues, and anxiety around cancer returning.
All of this can affect your relationships with other people, especially your intimate relationships. Cancer regularly ruins sex lives, especially if it occurs in the genitourinary system (AKA around your genitals, reproductive system, and urinary system). On top of that, relating to other people can become difficult. That’s especially true when all other people want to ask or talk about is cancer.
Hank Green: a case study
Enter Hank Green, professional science nerd. In recent months, he was diagnosed with Non-Hodgkin’s Lymphoma. Being Hank, he’s talked a lot about his cancer journey, especially in the vlogs he and his brother John share on YouTube.
In the last few weeks, he’s been deemed to be in remission — something that many of us hear as “You’re clear forever!” As we’ve covered, that’s not the reality.
This week, he highlighted what remission means to him. It’s not the all-clear that everyone thinks it is. That’s especially true when we take into account recurrence rates, a higher risk of developing other cancers, chronic pain, and so much more.
In the video above, Hank highlights how chance-oriented so much of this is. While some folks may not consider how statistically wild getting and surviving cancer can be, he’s definitely someone who recognizes those issues. When roughly a third of US adults will have cancer of some kind, it’s hard not to think about the numbers.
True to being an educator and explainer, he also recently talked through what cancer is and how to explain it to others.
Between Hank and Kurzgesagt, we can see how this disease is somehow both part of our bodies naturally and some ‘other’ entity. It’s hard for the average person to imagine their body betraying them in this manner.
At the same time, this is something that’s so common to chronic illnesses.
Chronic illness life
My chronic illnesses, for example, exist because parts of my immune system received the wrong instruction codes. The coding issue exists in both my innate (born with) and acquired (grown with) immune systems. That’s because I have both autoinflammatory and autoimmune diseases. Autoinflammatory diseases — such as Still’s Disease — have the glitch in the innate immune system. Autoimmune diseases, like psoriasis, have an error in the acquired immune system.
I’ve long struggled with the idea that my body is trying to kill me. It took me from when I was diagnosed in 1994 up until this year to process. Even then, I had to work with a trauma-focused therapist to get there.
It’ll still be something I grapple with, but it takes up less of my mind now. That means more of my life gets to be focused on living instead of thinking through statistics or being anxious. I hope that Hank — and all cancer patients — are able to get to this point soon, too.
What does this mean for the chronic illness community?
I mentioned earlier that I want to see a shift happen. I want to stop seeing comments like “If people cared as much about X disease like they do cancer, maybe I wouldn’t experience ableism so much.” Ableism is nasty and invasive, but somehow blaming or holding animosity towards cancer patients isn’t doing anything to fight that. And, unfortunately, I’ve seen so much of that in the community.
It’s so antithetical to what we want to demand from healthcare providers, researchers, and others. We can’t be hypocritical. We can’t act like we aren’t ableist, too.
Cancer patients do not have it easy. They don’t live in some binary world of health. We must recognize the weird states of limbo that cancer brings, from not seeing your saving throw rolls to not knowing how long you have to live. These kinds of issues aren’t far removed from what we deal with regularly. Welcoming cancer patients into our greater community means recognizing the similarities, the ways cancer has changed over the years, and creating a supportive environment for all of us.
If we can’t do that — if we can’t grow and change in the presence of new information — I don’t know that we can truly call ourselves a community.
PS: If you’re Hank Green, hi! Welcome to the chronic illness life. You can trade in your jacket for a comfy blanket over here, and there are cookies by the coffee machine if you need a snack. Thank you for putting good out into the world.