A Pained Life:  Should I Talk About My Pain?

A Pained Life: Should I Talk About My Pain?

I was at the insurance agent’s office and the discussion turned to people disabled by chronic pain.

She expressed skepticism that everyone who says they have chronic pain actually has it. I think that is a legitimate question. Given the invisibility of pain, how do you know?

What interested me the most was her criteria for deciding if a person really has the pain they claim to have.

“Sometimes someone will tell me they are on disability or disabled by chronic pain, but then they don’t talk about it. It seems to me they would if they were really suffering,” she said.

I smiled sadly.

TalkI rarely talk about my pain, but family members have told me, “You talk about it too much.”

I’ve asked other people what they thought — if I complained too much or found a way to bring my pain into a conversation. To a one I was told, “No, you almost never bring it up.”

I recall a kind doctor taking pity on me when I was in an out-of-state hospital for a protracted period. He asked if I wanted to go with him to the medical library in another building.

“You need some time out of here,” he told me.

I happily went with him. It was breezy outside, so the walk to the library was not much fun and triggered the trigeminal neuralgia pain.

Once inside he went off to look for his books. I was in tremendous pain and found a private corner where I could hide as I tried hard not to cry or make pain sounds.

I kept a watchful eye out for the doctor. As I saw him coming towards me, I fought my way into a smile.

“I looked for you earlier but couldn’t find you.” he said.

Feeling sheepish and embarrassed, I replied “Well, the tics would not stop. The pain was really fierce so I just went and found a place to hide.”

“Why didn’t you come find me?”

“You were doing something nice for me. We were just two people, not doctor and patient, so I didn’t want to mention the pain.”

He gave me a look of disbelief. I understood what he seemed to be thinking: “What’s wrong with her? Why didn’t she say anything?”

Between my family’s refusal to accept the reality of my pain and doctors who sometimes seem to be fighting my acceptance of the pain, I had learned my lesson well. It was better for me to keep quiet about it.

The other side did not occur to me: If someone doesn’t talk about their pain, then it must not exist.

It would be wonderful if there was a sign — besides facial expressions, falling into silence, removing ourselves from a situation, or refusing to go places and do activities — that spoke about our pain for us. Too often those signs go disbelieved or ignored.

It is just one more instance of darned if we do and darned if we don’t.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

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Amy

About three years ago, before I was diagnosed with RA, I had an experience with skepticism over someone’s disability. I was having a discussion with a woman about fitness and eating healthy. She told me about how much she loves her aerobics class and how she feels better when she can get to the gym 4-5 days a week. She talked about day long shopping excursions and other outings with friends and how blessed she felt. Then she told me she was on disability because she had a heart condition and couldn’t hold down a job because of her health. I asked what kind of heart condition and she said she didn’t want to talk about it and that it was a heart condition. I flat out told her I didn’t understand, but that I wanted to understand. She got angry and told me she didn’t have to explain herself to me. The conversation ended and we went our separate ways.

I try to give people the benefit of the doubt, but even now I still have trouble believing she really was disabled. Part of me feels guilty because I have RA and have been on the other end of that conversation. However, I feel she jumped to the defensive position extremely early in the discussion after mentioning being on disability. Part of what we as the chronically ill complain about is others not being aware of how we feel or not knowing about our condition. Then we complain that we have to explain to others, that we have to be an advocate and an educator. We can’t have it both ways. So we either have patience for those with ignorance or we educate those with ignorance.

I know I talk too much about my pain. Not because I don’t want to, but because I can see how it hurts those around me to hear of it (not to mention I don’t want to become the sort of person who can only care about my own pain).

I’ve never considered that not talking about it would lead to people thinking it didn’t exist. After a death of a love one, we don’t expect that person to constantly bring up how grieved they are, but that doesn’t mean they aren’t; we don’t expect blind people to constant tell us how they wish they could see, they might wish it, but what would be the point of saying it, it won’t make it go away.

Talking about our pain can be therapeutic, but it can also make us focus purely on our pain so that’s all we notice – living like that isn’t only bad for others, but for ourselves as we have to focus on the positives if we wish to make it to the next day.

It’s hard to know who will think you focus on and talk about your pain too much. My husband doesn’t need me to tell him I am hurting. He can see a flare coming on before I do. My son, who is 12, can as well. They just know. There have been times in the past that I was tired, grumpy and pushing to do things and my hubby has gently tried to get me to slow down. He’s never been the type to put his foot down or boss me around. But a few times, he’s insisted he take me to the ER. Because the other two people who know me best (after my guys) also have RA as well as other illnesses that have crept in on the heel’s of RA, for us, it’s normal to discuss pains and what’s hurting. As much as I hate that my Mom and bestest friend have RA etc., it’s nice to know you won’t be criticized for talking about your pain or not doing so. My pain doc amazes me. I’d not seen him for a 3 year period because I was in the hospital for 11 months and then in a nursing home for 2 yrs. I had to learn to care for myself again. For a good bit, I couldn’t feed myself even. Had to learn to write again. Couldn’t stand or walk from Dec 2008 to March/April 2011. My hubby had called his office to let them know but somehow the pain doc didn’t ever find that out. He thought I’d moved without telling them. I said that I definitely wouldn’t just disappear like that if I could help it. I was shocked he never heard. he didn’t have privileges at the hospital I was in and when I first got to the nursing home, they had to transport me by ambulance so the nursing home doctor decided he would handle my pain care. After hearing my story the first time I went back to my pain doc, he was shocked at what I’d been through. He asked me if I was doing like I normally did and was minimizing the effects of what had happened to me. I could only shrug. I offered to have records sent if he wanted. IDK if he ever got them. He could have as he has a signed release to get records from any doc. He knew the names of the facilities I was in so he could have requested them. But a few weeks later I went in for him to do a radio frequency ablation, or as he said it, we were gonna burn those nerves off. I use forearm crutches to walk if I am not using my wheelchair due to pain or fatigue. He always has someone with him to operate the equipment since the RFA is guided by fluoroscope. And both men went to help me up onto the table but saw I did OK with… Read more »

Jen C

Can’t use the word pain/hurt anymore, that means you’re an addict.Can’t list medications, if any are narcotic, like the 1/2 of 1mg I take occasionally =addict! That immediately cancelled out any attention to the reason I was at this particular doc(my husbands’, closer to home than my GP) thought it surely a simple thing for any GP, an embedded tick.Nope. So we must sit at Dr and be mute, say “I dunno why I’m here, duhhh??” All this equals 0 medical care. Cant relay symptoms, anything, and don’t violate the secret dress code that flags you as addict, either, whatever the hell that is! I hate to see any DR, I flat out refuse a hospital stay, even if it kills me. Hell, they’ll miss whatever’s wrong by this “addict” tunnel vision going on,(Mr Duncan w/ Ebola, sent home!) so why waste the $$$ when dying at home costs 0? This “war” has made health care impossible, unless you have the “popular disease of the moment”-right now it’s breast cancer. Disgusting.

Carrie

I to have learned to be silent. Just have slowly withdrawn from “life” once divorced and children were gone, I moved to the next major city where my pain clinic is. Because SSI doesn’t fund owning a car I couldn’t replace the old one. So I am home bound except for the appointments. No one knows me here and after a few years your friends in the last place you live get used to your being gone.

Cozette

I rarely talk about my pain. Those who know me know that. I try not to focus on the pain and talking about it keeps me focusing on it. Why is it that folk like to see others suffering? Unless they can “see” ones pain they don’t believe the pain exists. This is a cop out, to me, for a society that has been desensitized to others in lieu of seeing maimed and torn bodies all over the place. I would not run or look on others who have been in auto accidents just to see what they look like. I worked as a RN and didn’t like the thought of seeing someone suffering because their body had been ripped apart by some horrible accident or others. I am like you, Carol, we are dammed if we do and dammed if we don’t. I am not a person who likes to complain. No one wants to hear a complainer all the time and as you have stated, folk readily tell you so. So we live A PAINED LIFE in silence. My final analogy is this, some people are pretty on the outside but seeing the ugly part of them on the inside is not visible until they open their mouths either, is it?