People with chronic pain are considered failures who haven’t bothered to try to get better
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How to live hopefully with a chronic illness
What no one tells you about coping with chronic illness
How to be brave in the face of chronic illness
I’m trying as hard as my body will allow, and I’m still always going to be viewed as a failure. I’m always going to have to ask for help, I’m always going to be dependent on my husband for income and medical insurance. That makes me a lazy failure in some ways, but I still believe that there is more to life than just trying harder. If all it took was effort there would be a lot less suffering in the world. The “lift yourself up by your bootstraps and have amazing success” story is a myth. When people can’t lift themselves up by their bootstraps we assume it’s because they deserve it, but just because you are in a bad situation doesn’t mean it’s your fault. I don’t deserve to be sick and I don’t deserve to be treated like a failure just because I can’t get better. If all it took for me to live a normal life was some effort on my part, don’t you think I would do it? I’ve put an extraordinary amount of effort into just existing. I have:
changed my diet
changed my exercise routines
taken mountains of vitamins
tried herbal remedies
seen dozens of doctors
tried every medication recommended to me by doctors
tried to go without any medication to erase my dependence
made all my food from scratch
gone gluten free
gone dairy free
gone soy free
gone caffeine free
switched all my cleaning products to natural options
tried to have a good attitude
tried not to be depressed
tried not to be angry
tried not to be sad
tried to be happy
tried to accept my lot in life
tried to fight for a better life
At what point have I tried hard enough? At what point am I no longer a lazy failure? Will I always be a failure because I’m viewed by other people as being one? I don’t think so. Illness is not a failure, it is a circumstance of life. What helps that change that circumstance is:
A) dumb luck
B) a good doctor
C) large amounts of money
The majority of those things are outside most patient’s control, including mine. Telling people who are chronically ill to “try harder” is not only misinformed, it is offensive. If you want someone to become less of a “failure” you’re going to have to provide them with resources, Better doctors, better healthcare, more at-home assistance, etc. And that is something that is not easily fixed.
What an excellent post. It is so hard for people to accept that, no matter how 'hard' one tries, sometimes things simply will not change. There truly are things that are out of our control. Most people don't want to hear that, it causes great fear to think something may happen to them they will be unable to change. Hang in there darlin', you're doing your best, THAT is success.
How introspective and rings true to me.
How introspective and rings true to me.
Amen and amen! I cannot remember a time when I didn't get exhausted walking into a store. I wish everyone else understood.
I just got back from Christmas grocery shopping, I feel like it's going to take me a week to recover from that madness! It's so hard to explain that to people.
I can relate totally to needing to recover for a week just from Christmas grocery shopping!!
Even though I used a motorized wheel chair the overload on my body was immense!!
I can't hit like enough on this one. I'm so sick of being told to try harder.
Me too, it gets old very quickly.
The holidays are the worst. You want to be excited and enthusiastic. But, there is always so much to do: errands to run, shopping, cards, wrapping, baking, cooking and decorating. I want to be as excited as everyone else, but I just don't have the energy.
Exactly. I love the excitement, but I also find it so very tiring.
Thank you for this post. I have FM and other issues and just recently ive got more depressed about lack of life . We keep going if not for us tge family. Merry christmas
I have the same struggle. I wish there were better answers out there. Merry Christmas to you too.
I can so relate to what you are feeling and saying. I just can't put it into words as well.
Thanks Fibro Granny!
Thank you for writing what I've struggled to express. Your words cut to the truth.
Thanks Joy! They were definitely written at a moment of frustration with everything.
Thanks for stating this so clearly. Lately I finally have been telling people I can't do any more. I'm in terrible pain and fatigue most of every day. Have a disabled husband a disabled 3 year-old and 3 other special needs kids. I don't even have the option of going back to work. When I was working I barely made it through each day
I have two kids so I completely understand where you are coming from, it really makes this journey unimaginable hard. *Hugs*
Thanks for stating this so clearly. Lately I finally have been telling people I can't do any more. I'm in terrible pain and fatigue most of every day. Have a disabled husband a disabled 3 year-old and 3 other special needs kids. I don't even have the option of going back to work. When I was working I barely made it through each day
I feel the same way. I even have medical professionals, who are personal friends or acquaintances, who like to say that. Even my husband, who wonderfully researched FM so he'd understand what I'm going through, has been known to say it sometimes. They all must think I'm a quitter or just don't try at all. Maybe it's because they don't actually SEE the struggle. You know, limping or awkwardly trying to use a bandaged arm or something. You'd think the hubs, who's known me for 27 years (since we were 17), would not be so quick to think I'm not trying hard to get through the day, or even a specific moment. I wonder what all those people would say if I had MS or ALS. Can you imagine telling someone with THOSE diseases to "just try harder"? It's the same thing as us with Fibromyalgia – except no one can see the struggles we have. It's so very disheartening. And demoralizing.
I sometimes wonder the same thing. No matter how many times I talk about invisible illness and what it means, I think that people really desire to see obvious signs. Being tired all the time just doesn't seem to count. It's so frustrating.
Wow, this hit home with me big time! I am experiencing huge challenges working full time plus some, and they (my employer) doesn't seem to understand why or maybe I am not articulating it well. This clarified for me that people who don't have a chronic illness don't see or feel what we feel or see, so really explaining it the way you did was helpful and then if they still don't get it…. Well maybe that's their issue?
I think you're right, that's the issue. I've even shared this post with people close to me who don't really get it, and I even have to reading it I think they still don't understand. It's so frustrating!
I can also relate. I have FM and I am 8 months pregnant, I feel like I could just sleep for days. But there are so many things, the study has to be changed into a babyroom…painted,tiled. In the mean time life goes on. And end of the year at work (I'm a teacher) was crazy. I am emotionally and physically tired. And only my husband and my dad understands. But I think we all need to get to a point where we stop caring what people think. Believe me, I am not there yet, still struggling, but working towards it. I am very lucky to have a husband that really tries his best to understand an be there for me.
Oh my goodness, I can't imagine how hard it would be to have fibro and be pregnant. My kids didn't come along until after my diagnosis. I'm so glad your husband and dad understand though. When you have supportive family, it makes such a difference.
I cannot even begin to cover how this felt to read, I have been trying so hard for so long to make it all work! Seriously, not sure I care anymore!
I know the feeling, it's just impossible to make it all work.
I understand what you are saying. The thing is, I changed my attitude. Now it took me almost 55 years to be able to do this. I use a mixture of medication, herbs and exercise and no matter how bad the day is, I FIND SOMETHING GOOD. It may only be that I was able to get up out of bed and sit in the rocker. BUT I DID ONE THING RIGHT. When people tell me to just try or work harder. I chuckle and say "I am trying as HARD as I can. AND I refuse to let you make me feel bad."
I have Chronic Fibro, Chronic Fatigue, severe osteoarthritis, spinal stenos, deteriorating disk disease, a neurological disorder that causes a weak side and constant tremor, and to top it all off, my stomach does not empty properly. But I get up each morning with a smile. I refuse to let this me from smiling and trying to be happy. I am blessed. I have a daughter and two teen grands that live with me and help me. BUT when someone ask how I am doing, I knock their socks off, I simply smile and say. "I AM BLESSED." I am I am still moving and know that somewhere there is someone much worse off then I am!
What a wonderful positive attitude! I agree that it is important to focus on the good as much as possible. Unfortunately a good attitude isn't a cure, I wish it was.