This will anger a lot of you.
It angers me, too. Likely because we don’t think about what we don’t already think about – that is, what we already know to be true. We’re good as humans at remaining steadfast in our knowledge of, well, what we already know. If you believe something to be true and then you are exposed to new information that may invalidate or challenge what you know, you can be thrown off your rocker. Ignorance is bliss, but in no way is it a ticket out of learning and having your eyes opened. Sometimes growth – learning – hurts. A lot. And makes you angry.
That being said, are you ready to get angry? Ready or not…
There are common diseases worse than cancer.
There, I said it. Cat’s out of the bag now.
I hope you’re angry. You should be angry. I’m angry. The spectrum of bad diseases should stop at cancer. But it doesn’t. Cancer should be where the chemo stops. But it isn’t. Cancer should be the worst diagnosis anyone can get. But it isn’t.
There are diseases worse than cancer. I still want to believe that cancer is as bad as life, and health, could ever get for anyone. I wish I could go back to before I was diagnosed with ankylosing spondylitis so I could still list cancer as my only fear. Now I morosely watch the scales tip back and forth between the two diseases I personally fear the most; which one would I rather have?
Cancer is a privileged disease because it has gotten so much attention. There is absolutely nothing wrong with that because now many cancers are curable because of the limelight that has been shed. That is amazing!
Because of the amazing effort put in by so many and because cancer has been a household name for a long time, people know how to react when they hear the word. We know to say, “I’m so sorry” and to give people hugs when they break down in tears after a diagnosis. We know chemo makes hair fall out. We know to offer food and warm hats or funky wigs. There are programs that offer free massages to cancer patients. We know how expensive it is to fight cancer and we know to treat people with care because we know they might face fatigue and nausea and the inability to taste food. We know how bad cancer is. We know it can kill us. We know kids get cancer, too. We know cancer is a horrible, absolutely devastating, life-altering (if not life extinguishing) disease. I am the first in a crowded room to defend its horror; I have a list of many more than a dozen loved ones I’ve lost to the disease. Yet, thanks to so much attention and research, there are better treatments and cancer is no longer always a death sentence. Cancer is something people overcome every day. This is a bittersweet circumstance: cancer is bad but can be defeated. People can win over cancer.
But but but.
What about the other extremely serious, permanent, degenerative, yet marginalized diseases? Chemotherapy isn’t just for cancer patients; there are people who will use chemotherapy medications for the rest of their lives to manage a disease that will never go away, that will continue to get worse and never better. There are millions of people living with incurable degenerative diseases that almost make cancer look like the flu. There are many horrendous diseases without ribbons and awareness campaigns, huge research allotments, or financial assistance for families, etc.
What about the diseases that people are shunned for having, like diabetes? What about the diseases that are stigmatized (yes, still), like HIV/AIDS? What good does it do to bully anyone who fights an incurable disease, no matter who or what caused it?
What about the chronic, hereditary diseases that put so many on disability and into invisibility for the rest of their lives? What about the diseases that never ever go away, the ones that guarantee people can never expect to leave a doctor appointment saying, “I’m COPD free!”
What about ALS (Lou Gehrig’s Disease), which barely had a public identity before the inaugural Ice Bucket Challenge of 2014, yet remains nothing short of a death sentence? What about multiple sclerosis, cerebral palsy, lyme disease, schizophrenia? What about severe depression that leads to suicide? What about any one of the more than 100 forms of arthritis, including Rheumatoid Arthritis (about 1.3 million Americans), Ankylosing Spondylitis (about 1.1 million Americans), and Gout (about 8.3 million Americans)?
Cancer affects over 14 million Americans. There are over 200 forms of the disease. After heart disease it is the second leading cause of death in the United States but this is changing since fewer people are dying of cancer. There is currently an estimated $8.2 billion designated to fund research in fiscal year 2016 for 13 cancer types under the National Institutes for Health (NIH), the nation’s medical research agency, part of the U.S. Department of Health and Human Services. Cancer sucks, without a doubt, and I’m so glad there continues to be so much funding to find cures for all types of cancer.
Arthritis affects an estimated 52.5 million Americans. More than 22 million people report having trouble with their usual activities because of the disease. There are over 100 forms of arthritis. It is the number 1 leading cause of disability in the USA and the 2nd leading cause of medical discharge from the U.S. Army. Like cancer, kids get arthritis, too. But when people are diagnosed with arthritis, there are not the hugs like we give cancer patients, or the warm knitted caps and funky wigs. Arthritis doesn’t cause the same impulse reactions of fear and sorrow and empathy because many people think arthritis is nothing more than an annoying malady that keeps grandma from being able to open a jar of pickles. Wrong. Arthritis can cause expensive and painful joint replacements, joint and bone deformities, painful eye conditions (like uveitis and iritis), flares that leave people stuck in bed but desperate to move, and debilitating pain with sufferers often reporting a seven or higher chronic pain level on a zero to ten scale. That’s 24/7, unrelenting pain. And yes, people do die because of their arthritis (hey, remember Glenn Frey?). Then there are the side effects or potential side effects from medications, like hair loss, kidney and liver disease, tuberculosis, heart disease, cancer, and more. Arthritis isn’t a disease that just keeps people from being able to open jars of pickles; it’s whole body and life-impacting, taking away many people’s ability to accomplish every day tasks, and there is no cure. There is an estimated designation of $245 million (remember cancer’s $8 billion estimate) allotted for funding arthritis research in fiscal year 2016 – all 100+ different forms of it in one chunk – in the NIH. Unlike cancer, with more permanent dedicated streams of funding, arthritis inclusion on such lists has to be fought for and renewed on an annual basis by members of Congress.
My goal is not to pit cancer against any other disease – I held my grandfather’s head in my hands as he died from cancer one year ago – but to demonstrate with facts and figures that there are diseases equally powerful that don’t receive the attention that cancer does. Cancer is horrible and will remain horrible, and so will arthritis and many other diseases.
It’s unfair. Life is unfair, we all know that lesson. But what if we decided to do something about it? Let’s get angry there are so many other diseases as bad as or worse than cancer and do something about how much funding they get and how much awareness there is.
When President Nixon signed The National Cancer Act of 1971, it marked the day the United States officially acknowledged that cancer was a serious threat that needed to be aggressively researched and tackled at the federal level. Awareness is what we need. Awareness is what leads to research is what leads to better treatments and cures. It’s time to do similar things now; let’s begin wars on other equally destructive diseases that affect even more people than cancer.
Consider making a donation to one of the organizations that works to raise awareness and increase research funding, and facilitates programs for those living with a disease lacking general awareness. No money to give? Ask someone to donate in your honor. Or take part in advocacy efforts to help create better policies for people living with incurable diseases. Take the time to give a nonjudgmental ear and learn from a friend what it’s like to live with a rare (or not), marginalized, or serious condition. And please, take a few minutes to post a status on Facebook or Twitter about a disease one of your friends has you don’t know much about. Use the tactic that has helped and continues to help fight and find cures for cancer (bravo!). Help us raise awareness for other horrifying diseases as well so we can wipe out all the bad diagnoses of the world.
Give the gift of awareness, love, and support however you can. Then encourage others to do it too. Pay it forward.
If you would like to read more on this subject, check out my more current post: The Disease Everyone Loves to Hate.
I somehow survive on a fixed income as a disabled person; this blog is my outlet and largely a volunteer hobby. If you found this post useful in some way, please consider supporting my writing with a $3 tip at ko-fi.com/beingcharis.