Why are chronic pain and chronic illness so difficult for people to accept or understand?

This is a hard one to answer. I guess because so many people pretend they are ill? I really don’t know. Personally I have never been skeptical of any illness whether I can see it or not. I think it is human nature to be visual? What we can see makes sense to us. People really only understand something if they either suffer with it or have someone close to them suffer with it.

The comment at the beginning of the post was inspired by my hypochondriac father! Or God rest his soul perhaps he was not.

Are you talking about doctors of people in general? I’d say a lot of fakers are around trying to get pain meds with no real illnesses, addicts.

@KNOWITALL people in general.

@DigitalBlue It’s hard for people who have never really experienced it to understand.

I can honestly say I don’t understand it since (Thank God) I’m not in that position right now, but my mom and others have told me enough that I know it’s horrible and debilitating.

I have a few family members who deal with chronic (debilitating) pain. I’ve seen what it has done to their lives. They’re half the people that they used to be.

I haven’t experienced it, myself, but I get it and am compassionate towards those who have to deal with it.

It’s one of those things that you have to experience it to really understand. Maybe there are a few special people who can empathize without the experience, but they would be rare.

They don’t get that we can smile and enjoy things and also be in pain, with the pain chipping away at us while we put on the friendly face. When we let go for a minute and allow ourselves to succomb to the misery we are labelled as moody, but really we were in pain the whole time just holding it together.

The depression is seen as part of the illness, rather than understood as a logical state when a person finally realizes that their life forever more will be this sucky and maybe worse. It happens around the three month mark I think. We become the illness. It becomes our identity. We are now living with “X” as a total state of being.

If you have a constant pain in your side no one really understands the constant pain because you look fine. If you had a knife sticking out of your side with blood coming out everyone would be worried about your pain.

The disease is invisible, so out of sight out of mind for the onlooker. If you work and do your life in the discomfort they figure it can’t be that bad, but the truth is all too many people do their life in tremendous pain.

Don’t confuse chronic pain or chronic illnesses as a group with some illnesses that are based on symptoms. Fibromyalgia is one that is often questioned, because it is non specific, it’s juts that you have a certain number of possible symptoms that’s what you rdiagnososi. is.

And part of the issue is that people are ailing but the doctors can’t find anything to point a finger at that is to blame. Without something to blame, people get skeptical of the illness.

I think until you see someone you love or you go through pain that you know is not going away it doesn’t really hit home. Chronic things can grind you down if you let them. But unless someone sees them clearly, they might think you’re you just being a big baby or looking for sympathy. I have to remind myself of this when I see someone with a handicap parking sticker that looks normal. I haven’t walked in their shoes.

I am also quite familiar with your problems. I grew up with a mother who had a terminal disease. We found out when I was 12, and it took a very long time to kill her. In the meantime she spent her life in doctor’s offices and at physical therapy. Nobody could prescribe pain killers that worked on her.

The worst part is that if your symptoms are vague enough, it can take many years before you have a diagnosis. Doctors can’t see pain, so if they can’t see the cause of the pain, they have a tendency to “blame the patient”. As a result, Mom dealt with excruciating debilitating pain for years, and all they did was tell her to see a psychiatrist.

Even after she had a diagnosis and wasn’t “crazy” anymore, she still couldn’t find a pain medication that worked for her. Eventually her doctor told her that alcohol had fewer side effects than the prescription muscle relaxants he could offer her.

I’m sure you get where this is going now. Mom became an alcoholic, but at least she had “some” help, because he was right. Alcohol is an excellent muscle relaxant. My story goes on and on, but my point is, get the help wherever you can. Oh, and don’t be afraid to consider alternative remedies if your doctor can’t/isn’t able to help you.

I have been fortunate that despite being disabled due to chronic severe pain for almost ten years, I have not had to fight skepticism and derision from others.

Just as with mental illness, it is so easy for those of us who feel fine to sit back with our arms folded and say “Just snap out of it !!”

“Well…..I just ran a marathon. Why should that guy who looks about my age be allowed to park in the ‘Handicapped’ spot ?”

The answer to your question is, too many people are self-involved and stupid.

The End.

@Dr_Lawrence Are your disabilities visible? Also, do you think it has to do with having a specific cause for your pain? Many chronic pain/illness sufferers have no real diagnosis.

My ex-wife was clinically depressed throughout our entire marriage. She was clinically depressed when I met her. I don’t think I ever believed she was faking. I just was optimistic my care for her would somehow fix her, and frustrated when it did not. The harder I tried to fix her condition, the more frustrated I became that I could not.

Don’t assume people are skeptical, maybe think that people are trying, but getting frustrated because they can’t fix the illness, and losing hope themselves.

I think it is only a problem if one never talks about anything else and has created an identify out of their health issues.
I think it is really important to NOT identify with a problem or illness as who you are.
You are not your story, and pain, poverty, trials and tribulations in life are situations to be dealt with not an identity. I have a neighbor who has many health problems and it has taken over her identity entirely.

She can speak of nothing else except her back pain and all of her other, numerous, health issues.
No matter what you do to try and elevate the conversation above her suffering, she brings it back to the table instantly, often without even acknowledging anything you have to say aside from a vague ” Oooh”.
She is completely identified with her issues to the exclusion of all else.
Of course I have compassion but, quite frankly, I avoid her like the plague.

P.S. I have chronic pain at almost 54 from old injuries from leading a very active lifestyle for decades. I have a bad ankle, tendonitis in my thumbs, trigger finger, a bum shoulder that was destroyed in a horse wreck from my wild riding days, some dengenerative disc issues in my neck and chronic allergy issues that make me feel like shit more often than not. I rarely speak of or complain about my body stuff. It is what it is and once somebody knows, no need to make it a daily topic.

As a chronic pain sufferer from several different causes. I sometimes question my own pain. I know it is my mind telling me I hurt and sometimes my moods level of ease how long I have been experiencing the pain where I am on the depression scale. My hope for the future, what other things I am doing to care for myself.

I have a high pain tolerance. When my health tanked I kept up. But more and more if the pain is related to my conditions the harder and more worn down I get.

If the pain is unrelated and I know it will get better I have a high tolerance again unless I am so worn down on illness related problems.

Pain is subjective. There are many motives for using it or giving in to it. Whether we mean to intentionally or not. If we can’t trust our own how can we trust others.

Also it is unattractive and a turn off to many. And it saps the energy or is beyond the comprehension of healthy individuals. In many ways it is a burden.

A good example is type 1 diabetes. There are still too many people, who think, how terrible, can’t eat sugar and all that nonsense. It’s a very manageable chronic condition and most experienced diabetics thoroughly enjoy their lives.

Experienced Diabetics. Great band.

Saw them at The Garden in NYC in ummm…..‘86…...NO…...‘87….

@JLeslie My chronic pain began with soft tissue injury easily attributed to the motor vehicle crash. The duration of the pain went far beyond what was expected. It took years until the impingement of sensory nerves at various loci along my spinal cord were finally visualized. Those corresponded with the areas where I experience pain. Over time, the pattern of pain because more diffuse so that the label “fibromyalgia” made the most sense to explain my long term condition and its tendency to get worse over time. My disability is visible indirectly by the effect on my gait, my tolerance for walking and my response to sudden changes in barometric pressure associated with the approach of storm systems. My memory problems have been accurately documented and are attributed to chronic sleep deprivation due to the pain. My frequent feelings of exhaustion are consistent with the experience of others with symptoms like my own. I never had to prove anything to people in my life although fighting for compensation was a struggle for about five years. Some issues remain unresolved and may affect my pension when I reach age 65.

@Dr_Lawrence Thanks for sharing your experience. I’m glad you have people in your life who are so understanding.

I thought you might be interested to know that I have alpha intrusion in my sleep and the doctor who conveyed my sleep study results said that is observed in people with fibromyalgia and some other autoimmune diseases. He did not have any record that I had muscle problems. He said narcoleptics also have alpha instrusion and their have been small studies using narcoleptic drugs to see if there was any help for FM and CF patients. The studies weren’t double blind nor large. He was very interesrting, he obviously really cared about the subject matter. I asked him if researchers believed the alpha waves actually caused some sort of immune response that caused illness, or if they sas it as simply some sort of correlation. He said they don’t know. I wonder if you know if you have alpha wave intrusion yourself? I understand your pain interrupts your sleep as well, I can completely empathasize with that. It’s awful losing sleep from pain.

I wonder if it might also be like RSD? I really believe I had an RSD type problem for several years, although never diagnosed as that. My whole body, my skin was oversensitive to touch. Sometimes my thighs felt like every hair was a pin. Taking a shower hurt. It finally went away after a several years.

I hope you get some relief. I have had more than one painful problem in my life that got significantly better after years of suffering. Twice I was “cured” by accident. Something unrelated that help solve an ongoing problem. A little miracle from the universe. I hope you and all the other jellies on this Q can have their own little miracle and get some relief. Nothing like getting set free from the prison of pain.

@JLeslie My symptoms do not seem to match those of RSD. I appreciate your suggestion especially since RSD is new to me.Your hopeful and lind wishes are truly appreciated.

Sometimes people just can’t imagine things they’ve never experienced. I’m ashamed to say that I myself didn’t believe in fibromyalgia until I was diagnosed with it. Even for some time after, I had a hard time accepting my diagnosis.