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.
51 thoughts on “There Are Worse Things Than Cancer”
Thank you for this piece, I agree!
I have two inflammatory chronic conditions, one of them being autoimmune, that completely destroyed my life. I’m only in my 20s. Both are extremely painful and the pain doesn’t respond to antinflammatories or common opioids. It took me years just to get a diagnosis, during that time I was abused horribly by the medical staff. I think I might be developing PTSD as a result. Even now that I have a diagnosis, not much has changed. Doctors don’t listen to me and don’t treat my pain. It took me 3 years just to be prescribed something for my pain…and it barely works. I lost most of my friends and all of my extended family. They don’t care, they minimize. I never received a single gift or even a letter of encouragement, while I was bed bound and completely disabled. Instead, I lost my entire social life and my career. Nobody wants to hire me. I know many other people who are in similar situations…all of them have invisible illnesses like lupus, fibromyalgia, IBD, endometriosis, EDS… someone close to me has a mitochondrial disease and is progressively losing the ability to move their muscles, limbs and extremities. There ARE worse things than cancer, whether people like it or not! I know several former cancer patients who now live absolutely normal lives. I don’t think I will EVER be able to live normally. There is so much more empathy, support, and help for cancer patients. Chronic illnesses patients are treated like absolute filth by society AND doctors, and this is a documented fact.
I have been told phrases like “at least you don’t have cancer” so. many. times… while I was so lonely, hopeless, depressed and blinded by pain, I was ready to /go/. Thinking I have to live another 50, 60 years like this…is a truly terrifying thought.
This was written in 2015, it’s now 2021. Anyone else already fed up at how Long Covid is getting more attention and treatment than our existing diseases?
At last! I’ve been saying this on disease forums for years now and always get attacked for it. Most cancer can be cut out and cured: you can’t cut out someone’s immune system (coeliac disease, Sjogren’s syndrome – I also have endometriosis and cervical spinal stenosis but they are not AI diseases). After menopause (soon!), I may be free of the endometriosis and I can control the coeliac disease with diet. The other two bother me greatly as they will get worse with age.
Living with these conditions is like living in hell but no-one can see the fire and brimstone. People only care about things they understand. I have had more sympathy over the coeliac disease than anything else. People are so shallow they think not eating bread is a great tragedy. Having a limited and joyless life is a life sentence I was wrongly convicted of.
I’ve never got the big deal over cancer. Heart disease kills more people -does anyone know the symptoms? I certainly don’t. No, what I really fear is dementia and I have personal reasons to know how awful it is.
Thank you for this article. I took both my parents , who sufferred tremendously from cancer..or the cancer treatments…and drove several friends to chemotherapy approximately four years ago. During that time I got SEVERELY poisoned by a Fluoroquinolone Antibiotic..Cipro, and Levaquin.
All my friends who had cancer are able to travel, move, and have a life now. Not me.
NO ONE, including doctors, recognizes the fact that these antibiotics are deadly and have caused death and severe disabilty for life… FIVE FDA Warnings and still doctors perscribe them.
All the diseases named in the comments have names and people know what it is..there are treatments, doctors know about them. NOT Fluoroquinolone Toxicity. Nope..No one beleieves you, even if you are almost dead. Ive been house and bed bound for over three and a half year. It attacks your DNA and mitochondria, soft tissue: tendon ruptures, eyes, brain, my teeth rotted in a four month period. I couldnt walk for over a year…and it keeps on hitting you in different places and body sytems for years, or a lifetime. Everyone is different but Im on a FB support group that has 12,000 people in it…a fraction of the people who actually are “Floxed” (the term used) whodon’t realize that their body was destroyed by Fluoroquinolones..there are seven antibiotics in this category. Google it.
I Walked 15 miles in Rome (got a UTI on vacation treated in cruise ship)..flew home and woke up destroyed: overnite destruction of body, with something so awful and no one knows how to treat it and no one cares. We all find oput what happenned on the internet, and then go to support groups. Its a frightening journey. My so called Close family members visited me once and never called while I screamed in agony for my life for years…you are on your own. Many people who have had cancer say its nothing compared to the hell they are still going through. These drugs are given to 20 million people. year, during surgeries, without your permission. No one takes you seriously. FQT is the worst disease to get…(and causes many others, including cancers…) of all of them.. in my opinion.
Mmm how about vaccine injured people?
The only people to have their baby die, and people mock it. I have mitochondrial disease stroke like migraines seizure disorder scoliosis degenerative disc disease cervical stenosis MS and now cancer.
Feminism is much worse than Cancer today altogether.
Ehlers Danlos Syndrome is not as rare as once thought and it causes terrible pain, gastrointestinal problems, eye problems, and many other things. Please add it to this list.
Hi Diann, first of all, I’m so sorry it took me so long to approve your comment! Life has really been throwing curve balls at me lately and I’m struggling to keep up.
I am grateful for your comment about EDS and I hope many people who read this post come across your comment. The mentions of diseases in this particular blog post aren’t meant to be an exhaustive list of common diseases once thought rare (if I made that list it would be several pages!), but are just there as examples for frame of reference. I have many friends with EDS and learn of their life with the disease often – I’ll of course be mentioning it in future posts, I’m sure! 🙂 I’m all for helping the entire chronic disease community raise awareness and am dedicated to doing so, and I’m sad I am unable to list all diseases in every post.
So refreshing. I thought I was the only one who felt this. I’m a single mum of 2 kids I have gastroparesis, CIPO, fibro, on TPN to feed me &live with a ileostomy, CPTSD & I’m in constant pain & No matter how sick I get cancer patients always get priority even when I’m told I’m close to death. People don’t believe anything is as bad as cancer & the comments at times are insulting if not cruel.
Hi Elise, I’m so sorry you have so many diseases to live with that affect you in such bad ways. I’m glad you now know you aren’t the only one who feels this way. My hope is that as awareness is raised people will begin to see more diseases than cancer as horrific.
I have Lupus and Lymphoma. Lupus is by far way worse.
Thank you for sharing, Cindy. I’m sorry you have either, much less both, to contend with.
As someone who has suffered from depression and attempted suicide more than once I’m happy to say that it is nowhere close to being as bad as cancer (which I fortunately haven’t contracted yet) and that suicide is after all a choice. And at the end of the day depression, like schizophrenia, is very treatable.
Thanks for your comment, Harold. I am sorry for your suffering. I just want to note that, for some, suicide was not/is not a choice. Someone close to me is living proof of an attempted suicide that they (using nongendered pronouns to protect the identity) did not choose due to bipolar disorder.
Hiv is not a death sentence or even that bad if you’re on meds. Cancer is spectral, also depends on when it’s found (lots of misdiagnoses). Some forms at some stages are a death sentence. Sitting there afraid of where it will spread, what body parts they have to cut out! It is truly terrible in many cases. Having your body chopped up is uniquely horrific to cancer and a few other diseases.
I agree there are other serious diseases, in some cases worse, that get little attention and funding though. Its a good point, Like CFS. But, still have respect for cancer victims. It can be a death sentence, a truly horrible one at that.
I agree with what you’re saying on some level but nit entirely. For example, HIV, for those who have meds, is not a big deal. They live long, healthy lives. No comparison to cancer.
Cancer is spectral, some much worse than others. A lot depends on detection, if its early or late. A lot of misdiagnoses. Its super scary not knowing if it will spread or if they have to cut out body parts or your voice box. It can be a death sentence. Few other diseases involve cutting up a person’s body. I’d show some respect still..,
The game of whose disease is worse is messed up. But the point that could be worse conditions than *some * forms of cancer, which often receive little funding is a valid one.
Hugs to all 🙂
I couldn’t agree more. Cancer is awful and I wouldn’t wish it on anyone. But it’s not the horror story or the death sentence it once was.
I myself have had Myalgic Encephalomyelitis for 30 years. I also have fibromyalgia, osteoarthritis, osteoporosis, restless leg syndrome and many other associated lesser conditions.
For me the ME is by far the worst of my conditions as it leaves me 95% housebound and frequently bedbound. And has done for the past 7 years.
In fact this study shows the difference in quality of life scores between ME patients and several of the other recognised severe illnesses, including cancer. http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421 See in particular the graph just over half way down the article.
Also this article about the above study says ‘These studies suggest that people with ME/CFS get hit harder and in more ways than any disease that’s been tested yet. That was reflected in the incredibly low employment levels found in this study – just 7.6% – and the very high rates of disability (52%).’ https://www.healthrising.org/blog/2015/08/05/chronic-fatigue-syndrome-worse-mulitple-sclerosis-cancer/
Add into that the fact that cancer is widely recognised and money is (rightly) thrown at research and treatments for it. Yet ME and CFS are not. They are very often dismissed as being all in your head or simply ‘just a little bit tired’.
I don’t want to belittle cancer or it’s sufferers in any way whatsoever and nor do I envy them. But I do wish some people would recognise that there are many, many other similarly difficult to live with conditions and several that, these days, are worse to live with.
Thank you for sharing, Margaret. Everything you said is so true.
I couldn’t agree more. Cancer is awful but it’s not the same horror story or death sentence it used to be. Studies prove that there are now several other conditions that are now considered worse to live with.
My heart goes out to anyone with a dibilitating invisible illness, autoimmune and cancer. I have been suffering for the past 5 years.
I suffer chronic pain, insomnia, chronic joint back and hip pain to the degree I want to take a scalpel and cut my legs off, i pee blood on a regular basis, I have anemia, I have chronic fatigue, swollen lymph nodes I have constant headaches and migraines, brain fog, dryness of my sinuses, skin, eye pain, sensitivity to light and the sun, skin rashes, allergies to food and medication, reflux, calcification of arteries in my lungs, calcification of my bones, high inflammation, constant fevers, nausea, vomiting, stomach and gastric pain, shortness of breath like someone is always sitting on my lungs, sinus pain, I have suffered this for years.
Drs are now just taking me seriously because my blood tests are finally coming back for auto immune disease but it’s going to take months to diagnose me because I have symptoms of lupus, scleroderma, RA, mixed connective tissue disease and until my symptoms either get worse or are more focused they can not diagnose me or treat me.
I am faced with the prospect of my body my immune system that is meant to protect me is actually slowly killing me and I feel like I am dying a slow painful horrible death. I am also faced with being diagnosed with some of the rarest auto immune diseases which have no cure and also are treated with cancer medication. I also face the prospect that I will encounter organ failure at some stage beccue of how aggressive some of these auto immune diseases can be, I also face the possibility that if I do have the systemic version that my kidneys, lungs and heart will also fail and I will die. This is my scenario that I am facing.
Yes I know cancer is a horrible disease I know it can kill but auto immune diseases although you won’t die from it, it causes so many complications to your organs that you eventually die from organ failure. Cancer can be very quick and I know that because I hvw family friends who have died from it. But I also know cancer has a better survival rate now than ir has ever before and that most people only get it once and they are survivors.
I had my boss tell me to toughen up at work, to stop being a princess because I was so unwell at work. He told me he had cancer and that was worse. I looked at him standing me at saying me. He stood there healthier now, stronger now after beating cancer telling me there is nothing is nothing worse than cancer. But he stood there alive and a survivor telling me that. He fought it ans he won. He fought for a year – he suffered for a year ans now he is back to normal.
There’s is no going back normal for me, there is no surviving it ans being done with it for me. I will only get worse, I will only have more problems, I will only be at risk of developing cancer due to having an immune system that is attacking my body every minute every of everyday. I have no break, I have no cure, I have no hero or survivor story because I will never be rid of much disease that progressively gets worse.
I have flares everyday and then i might get a bit better for a feel days but then again I Am waiting for that flare to rock me to my core and I am bed ridden again for weeks or months. I cry on a daily Basis because the life i once had of being energetic and fun no longer exists and i do not know how my life came to this. I was fine and all of a sudden I was not. I will never get my life back because of how badly I Amcor affected.
My boss resumed husbands life year ir as scary for him for a year yes he needs to do regular checkups but he has gone back to his normal life. I have to attend half’s yearly check ups to make sure my lungs, much heart, much kidneys haven’t mummified, I’m turning into bone – calcification from excessive inflammation. What is normal for me? Constant drs appts, scans, blood tests, hospitalisation, infections, I do not get recognitions of these diseases, because they can’t see them. I was told I might the prettiest sick person ppl have seen. I am suffering day in and day out.
I don’t get a hug, I don’t get any understandings of the seriousness of the dieseases I’m exhibiting. I don’t get support and i don’t get help because as my boss said it’s not like you have cancer. There are worse things out there than cancer. I would take a risk with cancer than an autoimmune disease because at least I have a chance of beating it and moving on with my life the way it was and if not I do not mind dying from it because the life death sentences ive been given is way worse to me.
Thank you Little p, for sharing so much of your story. I’m so sorry for what you and so many of us go through with our respective diseases.
I know I found this much later than all of you, but I want to thank the author for a very insightful (and truthful article).
I too, have lost many friends to cancer, and I absolutely detest that scourge on life. But it is true that there are some diseases that may be worse… I have RA, which to date has not caused me too many problems, but it will.
However, the diagnosis that trumped all of them, at least for me, is the most cruel that I’ve ever known…Huntington’s disease. The dread, the fear, knowing I’ll become someone else, a burden and a shadow of myself. The guilt of having had children that may inherit this…worrying about them. Honestly it’s a complete and total game changer, and something I absolutely cannot outrun, outwork, out think. I wouldn’t wish this on my worst enemy…
Thank you for sharing that, Lee. I hear you!
I understand completely. I have Behset’s Disease and Rheumatoid Arthritis. About 12 years ago I started having problems with my eyes. I went to every kind of specialist you can imagine. If there was an eye drop or jel it has been in my eyes. I was losing my eye sight fast. I was finally diagnosed at the Mayo Clinic with HSV Recurring Kerratitis. Which was manifested due to my auto-immune disorder. I experienced the same lack of outpouring of love all of you did. I am on several medications that I will take for the rest of my life. I am also a breast cancer survivor. I can honestly say I dealt with that better than my long term diseases. My love and prayers goes out to all of you…
I disagree that AS is worse than cancer, and I’ve dealt with both. AS Sucks, I get it, I’ve had it since I was a kid and have not worked since in my mid 30s. I struggle to get through the day, let alone play with the kids. However I am still here with AS, cancer could cause a different ending and one that terrifies me more than AS ever could. I agree cancer gets all the press and has had a lot of research. The care and home help is better. The understanding from family and friends is better. However the disease and treatment is much much worse. Methotrexate is not chemotherapy when used in the small doses it is for AS. Trust me, when you’ve had full doses you know about the difference. The side effects are beyond brutal. Please stop trying to do a “my illness is worse than your illness” routine. It’s childish and what drives us mad with politicians. Campaign for AS, raise its awareness and get extra support for us, but do not compare it to cancer, let alone say it’s worse. For now I’ll just keep my fingers crossed for 5 years and hope I beat cancer. You know that there is no test to say you clear of it? You just have treatment and hope for the best? Have you any idea of the mental torture of that. So yes whilst many people are cured of cancer these days they don’t know for many years that is the case. Can you imagine the toll that takes?
Hi Karen, thanks for commenting. I’m glad you felt welcome to make your comment.
Would you mind sharing where I said AS is worse than cancer?
Also, I just want to share your last few sentences here and respond below:
“You know that there is no test to say you clear of it? You just have treatment and hope for the best? Have you any idea of the mental torture of that. So yes whilst many people are cured of cancer these days they don’t know for many years that is the case. Can you imagine the toll that takes?”
…YES, I know exactly what that’s like, with one exception. In response to your line, “many people are cured of cancer these days they don’t know for how many years that is the case,” people with incurable diseases don’t know what this is like. We don’t have a cure for anything, and our diseases will never go away. Ever. And they will always get worse. So yes, I know firsthand the toll a horrible disease takes, especially one that doesn’t have a cure.
you have delt with als
Agree 100%. I have Chronic Lyme.
LikeLiked by 1 person
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 email@example.com
I agree and I have long term cancer,
Thank you for your comment, Ronny. Hopefully one day it will be the norm to advocate with each other across all long-term, severe disease types!! Keep doing what you’re doing.
LikeLiked by 1 person
THIS WORLD NEEDS MORE COMPASSION. Too many narcissists!
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.
LikeLiked by 1 person
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.
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.
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.
“How can I live another 30 years like this?” -That’s the WORST part. I cannot believe that a person can be this seriously ill and survive this long. My twins have very aggressive Autoimmune disease (my daughter since 16 months and my son since 8 yrs old). So we’ve been dealing with this over 12 years. I have to watch them suffer every day- we lost everything and no one cares- our family can’t deal with it and won’t help. They have autoantibodies against their brain as well as throughout their bodies. I know there cannot be a god or if there is -its a full on psychopath. I have had many ideas to make things better but the docs refuse to even try- no one gives a f*** about them- seriously the medical community sucks. When your kid has cancer you get tons of sympathy and even free medical care. I just stay here in the house and listen to screaming and crying for 18 hours a day until they both finally pass out.
I’m so sorry, Deb, that you are going through this and also feel so unsupported and alone. Are there any groups you’ve found (in person or online) that give you an outlet?
At least know that you aren’t alone in experiencing this. I hear you.
Sorry, that reply should have been directed at “Pissed Off.”
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!!!
LikeLiked by 1 person
I’m so glad you commented and shared this. So many people don’t realize how debilitating arthritis is.
Thank you Charis for bringing attention to spondylitis. You are so provocative 🙂 Support groups & information is available to everyone affected by spondyloarthritis at http://www.spondylitis.org
LikeLiked by 1 person
I like the word “provocateur.” I think it fits me!
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.
Thank you, Jayne. I’m fighting to join you on disability…as much as I don’t want to.
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.
LikeLiked by 1 person
Thanks Andi, for your kind words of support and encouragement. I will not stop writing the difficult posts – there is so much more to say!
I love this I have AS. But am told that I am just fat and lazy arthritis is not that bad
Tiffany, I’m so sorry. I hope you have some friends or family who are supportive and try to understand.
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.
LikeLiked by 1 person