“The most exhausting thing in life…. is being insincere.” Anne Morrow Lindbergh
Talking to my sister the other night, she said to me that in our childhood, I gave no bodily clues that I was in such constant pain. I found that hard to believe. To me the pain was omnipresent. It was seldom not there. But somehow I had learned that it was best to not talk about it.What caused me to work so hard to hide my pain?
Did I hope that by not acknowledging it, it would go away?
I knew of no other person, besides an elderly aunt, who suffered with constant pain. I had complained on many occasions to my parents about how much my legs hurt. They were at a loss to know what to say or offer any relief.
I feel committed to conversing and hearing others converse and validate their pain experiences. It is only by trying to find the words to communicate the intensity of these experiences that we can move the understanding forward. There may come a day when we have a socially acceptable way of communicating how we are feeling rather than spend so much energy hiding it.
Have you hid your pain? What causes you to do this?
January 30, 2010 at 10:23 pm
Hi Mary,
Until your post, I’ve never thought about calling this “hiding my pain”… I don’t tell people straight into their face when I have some pain but not a lot – that’s an OK day to me (as in not terrible).
Close friends know I have chronic / recurring pain, and I feel that it’s none of the business of those who aren’t. I am plain tired of explaining how chronic pain is different to acute pain to every man and his dog who then thinks they can dish out well-meaning but utterly unqualified advice. It’s simply too draining, and doesn’t benefit me or them.
To me this way of living with chronic pain is part of choosing my battles (and allocating my energy) wisely.
However, my “emergency sheet” on my bedroom door – the procedures I tend to forget when I have a bad day – begins with the reminder: “Tell my husband I’m in pain – he can’t read my mind.” So I guess I’ve been hiding my pain from him – but I think a good part of it is if I don’t act like I’m in pain, it’s easier for myself to get through the day.
January 30, 2010 at 11:13 pm
Rebecca, Thanks for your reply. You are so right, it is a private matter. Sometimes I think I treat my pain like a crabby child, ignore it and it will go away. Wish that were true.
Be well. Mary
February 13, 2010 at 10:09 am
Hi Mary,
My reason for hiding the pain is that when I was a child, no one ever believed me when I was sick or in pain. Shortly before my mothers death I mentioned my asthma. She asked me how long I had had this. I told her that I had had it since I was a child. She said she didn’t know that. I told her that no one ever believed me.
This is why I don’t mention it to many people and have a difficult even talking to a doctor about it. I feel like they won’t believe me. For a long time doctors DIDN’T believe me. It took over 20 years to find a doctor that knew about my condition and tried to help me with it.
Namaste,
Pat
February 13, 2010 at 11:19 am
Pat,
These are the things that as adults are so hard to believe. Why couldn’t the adults believe us??? I am glad that you finally found a doc that you could confide in.
Namaste,
Mary
February 13, 2010 at 1:30 pm
Hi Mary
I’m glad you enjoyed my homage to Matisse on my blog.
I was curious about your blog, so here I am.
My thoughts on telling others tht I am in constant chronic pain:
Their experience is so different from mine that they cannot identify with my words. I try to keep the pain off my face and struggle to present a neutral, pleasant look to the world. When I am unable to do this and the pain shows on my face, people are shocked and think I am angry. They relate to me in an angry way or with too much sympathy. Either way, dealing with their reactions makes too much work for me on top of handling the pain and trying to accomplish some work. When someone communicates with me on a heart to heart level, I mention my pain. It is not really a secret. They, as all of us, are busy/occupied and forget. Misunderstandings abound because of the expectations that others have of me at times. I am learning patience and graciousness.
Before I leave your site I will look at your art. All the best, Deborah.
February 13, 2010 at 7:55 pm
Deborah,
Thanks for stopping by. It is amazing the games that we play and the energy that it takes at times. Patience is where it’s at. Keep on keepin’on.
Be well,
Mary
June 29, 2010 at 2:45 am
The one irony of living in pain is that I feel required to hide how much it effects me from my doctors. If I went there acting how I truly felt, I would never get ANY treatment…
June 29, 2010 at 10:28 am
Selena, thanks for stopping by. It is amazing that the folks we trust, like doctors, may never have personally lived with a chronic pain. So how can they understand the intensity and ugliness? And it is scary. I visited your site, AWESOME! Your honesty is an inspiration. You tell it like it is and that is so worth sharing.
June 30, 2010 at 11:08 am
It was almost a form of shame…you complained enough times and everyone thought you were just whining at that age
Hasn’t helped me much as an adult – that is for sure.
June 30, 2010 at 1:12 pm
Annie, Isn’t it a shame that we should feel shamed by our pain? Truth is there is so little known in the medical community even about chronic pain, how can we expect others to understand something they do not even have ways of measuring. But that is changing and blogs are great ways that professionals can peek into our lives and get informed. Be well. Mary
June 30, 2010 at 1:54 pm
Mary, I have also had chronic pain in childhood and my parents and doctors did not believe me. My parents also told me to stop complaining about it. I hide my pain mostly because I don’t want to be seen as a complainer and I can’t forget the people that didn’t believe me before and may not believe me now. It is also a part of my efforts to be positive and cheerful.
June 30, 2010 at 3:11 pm
Sometimes I hide my pain because I just don’t feel up to explaining my situation. Sometimes I do it because I don’t trust the audience. What I do more than anything is downplay what I’m going through. Gloss over it so people can see me as more than this awful thing that has happened to me.
I feel shame about most of the effects chronic pain has had on my life, like preventing me from working. I don’t bother telling people unless it becomes important for them to know.
June 30, 2010 at 7:05 pm
Migrainista, thanks for your great comments. I so understand what you do and why you do it. But isn’t it ironic that we should feel shame for our pain? We did not bring it on, we would choose not to have it and we cannot control it to a great extent. Our society knows so little about pain language. There are African tribes that actually give names to their pain that correlate with the intensity of it so folks can understand what they are dealing with. And we call ourselves a civilized society. Keep doing what works, but I think it is up to us to educate others so we can improve the “conversation about pain”. Be well, Mary
June 30, 2010 at 7:12 pm
Patricia, I love your comments. I can remember feeling as a child that I must have cancer because I hurt so bad, I did not even know what cancer was, but just that it was bad and you did not want to have it. A friend reminded me that when the president, FDR, who everyone knew had polio, made a speech it was never from his wheelchair. What does that say about how we feel about anything that compromises our health? It is such a fine line of being able to share our feelings but not feel that we are burdening others with our circumstances. I have a pain pal at work and just having one person who knows exactly how bad I am feeling helps me deal with my pain. Keep being positive and cheerful, but hope you can find a pain pal also. Be well and thanks for stopping by, Mary
July 1, 2010 at 2:36 am
Sometimes it is easier to smile and say that you’re feeling ok, than explaining your pain to people.
July 1, 2010 at 5:39 am
Carly, Thanks for stopping by. You have a great site! esp. I also loved reading about the CHIPS program you work with.
It is our right to decide who should hear the story of how things are going.
But you are such an advocate for those with disabilities, and that is where we can focus our energy. We have to keep moving the conversation forward. A few years ago when I was doing some PR stuff for a Chronic Pain group I discovered medical dictionaries did not even have an entry for the word. What is up with that? Be well and the best to you with your outreach efforts. Mary
July 1, 2010 at 10:14 pm
I did hide it. A doctor intimated it was all in my head and I hid it.
Chronic pelvic pain may have been resolved with surgery, but I will never forget the lesson I learned. FIGHT to be heard. If a doctor doesn’t believe you, maybe the next one will.
July 2, 2010 at 6:03 am
How sad is that! But it sounds like your experience gave you some real strength. I do believe there are blessings that come from our pain. And you were so right to pursue another opinion. The whole science of pain management only began in the 50′s. Professionals have a lot to learn, hopefully we can keep informing them. Be well, and thanks for your story.
July 5, 2010 at 4:06 pm
Maybe in an ideal world I could be honest about how much pain I’m in, however I find that overwhelmingly it is a big mistake.
Relatives, boyfriends, husbands, “friends”, doctors, ER staff, nurses, have rarely listened and almost none have understood how crippling it is. I find most will just leave. Would be nice to find loyal friends and significant others who could sympathize or offer help, but I haven’t found this to be the case.
I hide my pain to keep from losing the last few people in my life, and I rarely ask for help unless desperate.
July 5, 2010 at 5:32 pm
Anna, thanks for stopping by and adding your thoughts. I so hear myself in what you say. You pose good reasons why not to speak out. And it is so hard when we have spoken and no one seems to “get it”. That is a double whammy. Maybe this drives the need for Chronic Pain support groups that are safe places to speak out, folks identify with each other and share resources. There is one that Felisha Starkey just began, in St. Louis, and it is very worthwhile. It is amazing that so little is understood about this field of Pain Management and it is those of us who are in the trenches who can speak out, like commenting on blogs to educate others. If there is not one in your area, consider starting one, it is amazing who shows up.
Be well, Mary
June 10, 2011 at 9:13 am
hi everyone, l also suffer chronic pain for the past 3 years, due to my foot injury. l try to tell the surgeon but he dont listen l tell my worker but he dont believe me, my foot is so swelled l often wonder if theres still injury to me foot but the dr. says its all good so my worker says its all good,l often cry within myself cuz to hide the shame of feeling my pain, l am so down and depressed l cant talk to noone about this cuz they dont know what im feeling, take care everyone the posts are great l know im not alone thanks
June 10, 2011 at 10:53 am
Diane,
So sorry to hear of your discomfort. Keep searching for answers, you know what you are feeling, you just need to connect with the person who can define it for you. Thanks for stopping by my blog. At least reaching out on blogs, you know that you truly are not alone. Keep up your search for answers and solutions. Blessings. Mary
October 26, 2011 at 9:43 pm
Rebecca, the first person that posted took the words right out of my mouth! For me, I do hide the pain from my coworkers, so there’s never any reason anyone could say I’m not doing a good enough job. I also don’t want to give anyone an excuse to pity me. It also takes a lot out of me to explain why I have pain and why I can’t just put a heating pad on at night to treat it! Everyone that knows about my pain always has a kindhearted suggestion, but, usually, it’s misguided.
As Rebecca said so concisely, discussing my pain (with most people) benefits neither me nor them.
It’s nice to hear how other people feel about this and live with their constant pain. Thanks for sharing!
October 26, 2011 at 10:04 pm
Zoe, Thanks for sharing. There is so much frustration, confusion, guilt and shame surrounding personal pain. I do feel that by sharing together, in formats like this, perhaps it can validate some of what we feel. And with more conversation perhaps there can be more understanding of the depth of this experience. I know that the more we can move the conversation forward, the better we will be understood. Blessings.