There Are Worse Things Than Cancer

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 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.

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19 thoughts on “There Are Worse Things Than Cancer”

  1. My brother David has been dgx with ALS for a little more than a year. He showed signs of it for close to three years and no Doctor was able to figure out what was wrong, until my sister whom he had been living with kept trying to bring him to each doctor —- finally found a doctor who recognized almost immediately that he had ALS. He has been taking medication that was made available to him only through a medical grant funding from those who have donated to the continuing research for a possible cure. He has slowed down in the progression, but without side affects. My hopes and prayers are that, you can also contact the Doctor for possible cure if you have ALS or any relative suffering for same disease here is their email healthmedlab@gmail.com

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  2. yes 😦 i’m one of them. it sucks isn’t it? being young and ill and having people to rank against you. “oh you’re too young to be ill.” “why can’t you just die.” “there are others who are worse than you.” i get lectured about cancer many times. then theres this one day where I ambushed.

    “LISTEN TO ME. LISTEN TO ME GOOD. NO OFFENSE BUT HANDICAPPED PEOPLE AREN’T ILL. I HATE IT WHEN DOCTORS CAN CURE ACCIDENTS, CANCER AND REMOVE TUMORE BUT THEY CAN’T CURE CHRONIC DISEASE. HOW ARE BLIND ARE YOU? I SWEAR TO GOD, IF YOU KEPT RANKINGS AGAINST ME, I WON’T EVEN HAVE THE TIME TO BE CURED.”

    Sorry for the caps but I’m really pissed off. Born with 1 disease, kept silent until it developed when I’m 20 and more illnesses starts to grow on me as I’m ageing.

    Liked by 1 person

    1. Thank you for sharing. I’m hopeful we can all raise awareness better awareness so chronic diseases are less “ranked.” We should all be helping each other with our health struggles, not competing – but for now it sometimes feels that way because we feel we have to prove how sick we are.

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  3. Thank you for expressing the angry and frustrated things that I haven’t said out loud. I am almost 50 and was diagnosed w/ AS about 18 months ago (although when I review my life & symptoms, I’ve been sick a LOT longer than that). I’m angry, frustrated, but most of all, I’m tired – for all the reasons you have expressed (I’ve read all your posts). My father died of cancer – I know he was in pain, but it was relatively quick, just 18 months. My mother just died from kidney failure. She was in pain, but only severely for the last three or four weeks of her life. When I’m in the midst of a flare (like this week), I sit and think about how the HELL I can live like this for another 30 years. But knowing there are others out there that truly understand what this is like…well, it doesn’t necessarily give me hope, but it somehow keeps me going. I’m sorry for all the people with our crappy chronic pain disease,and sadly, I know an awful lot of people. But at least we have the fact that WE understand each other and what this is like. WE know we are not making it up, or just being whiners (and most of us DON’T complain out loud very often). WE give each other a reason to take a deep breath, take our meds, and keep on going every day. Thank you for being a voice for us.

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    1. Thank you Deb, for your words of encouragement to keep sharing things that none of us want to admit out lout.

      I will keep sharing things that make people angry, if only for the reason that they fear the unknown. It is difficult to accept things that we don’t want to fit into our view of the world.

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  4. This is so interesting and true charis. My grandmother is 79 in perfect health but has arthritis in her knees. She amiles and moves as if she is t hurting but she is in excruciating pain. She is a fall risk due to having zero cartilage in her knees she tries her best to not get to where she will need a walker and p pray everyday that I do t come home one day and find her on the floor. She is a strong woman and will NOT give up!!! Thank you for this. There are worse things than cancer!!!

    Liked by 1 person

  5. Love this. I have severe Crohn’s, am on chemo and have lost my hair. Crohn’s almost killed me. I am now on disability. It’s not a fun disease.

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  6. I’ve been disabled for 3 years with Crohn’s, migraines, adenomyosis, depression, anxiety, chronic pain and multiple other diseases and conditions, not to mention side effects and symptoms from medicines and diseases.

    The number of friends I still talk to (of whom I spent vast amounts of time, money and energy with for a decade) is down to a few. If I had Cancer, friends would understand how I’m not in control of my symptoms, or which days will be good vs bad. Since it’s from multiple conditions, people think I’m being lazy, not doing enough to make myself healthier, etc.

    Thank you for acknowledging everyone out there who is disabled but invisible. Ironically I spoke with a friend a while ago who has chronic illness but also dealt with Cancer. She told me that Cancer was easy…there was a clear cut plan of attack. She wasn’t saying treatment was easy, but if caught early (like hers was), the amount of time you need treatment is vastly less than an autoimmune disease. She knew what to expect, dealt with treatment and surgery, and had tons of help (did you know there are cleaning services for women with cancer, who will clean your house every couple hours for free?). Then she went into remission, and was back to her “normal” illnesses and conditions, and since the Cancer was gone, people acted as if she was cured and should be able to resume her life before any illness. She said if anything, she felt worse about things after seeing how much help she had during part of her life, but how people fell away and weren’t supportive after she was in remission from Cancer.

    Do I fear Cancer? No. I fear diseases like MS or ALS, and things like strokes where you don’t have control of your body but have your mind in tact. I send support out to those who have those diseases. You are strong individuals, and I hope you have the assistance you need through your journeys. I hope funding continues to go into autoimmune and other chronic illnesses that people have a hard time getting support for. It’s very much needed. I’m sending out strength, love and healing to anyone out there who needs it. I hope things get better and more support is built and available to all who need it.

    Thank you, Charis, for saying the things so many chronically ill people think, and that more people need to be aware of.

    Liked by 1 person

      1. I suffer from nystagmus for the past 2 years. I am 47 years old and own my own business. My world is always moving 24-7, and when I stand or walk I am off balance 24-7 as if I’m drunk. I was a very very active individual who went to the gym 6 days a week and ate a very healthy diet. I was in GREAT shape. I came down with a cold/sinus condition which I seldom get. I decided to take a nap on the couch. When I woke up, I was never the same. Dizzy and off balance. I initially fell down my stairs twice because it throws off your depth perception as well. I have a friend that just endured a masectomy on one of her breasts. Boy, the replies and support on her facebook page, the presents, the love etc . . don’t get me wrong it was rightfully deserved. When you have an invisible disability as I have, you are unfortunately alone in your suffering. I put up a Facebook post to put out awareness of this disability I and others have. I didn’t receive much love and support. Not much. No love, gifts, offers of help, NOTHING. I suffer alone. I just recently showed the agonizing write up that my recent opthamologist wrote up about my condition and bleek outlook . . and forwarded it to my sister so she could grasp what I am going through. All I got was, “it’s nothing I haven’t heard before from this, you just have to accept it and move on with your life”. Are you kidding me!? . . and I don’t even get a simple text or phone call during any day to ask how I’m doing. N-O-T-H-I-N-G. After I was there for her and supported her through her difficult emotional journey of her son having cancer who survived it, did I tell her just accept it and move on? It really utterly disgusts me. Have a heart, give support and love to all who need it. Try to be in someone else’s shoes. A quick text, or phone call doesn’t take that much time to show someone you care. It could make all the difference in someone’s LIFE.

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