How Do You Explain Chronic Pain to Someone Who Doesn’t Have It – Reaction

How Do You Explain Chronic Pain to Someone Who Doesn’t Have It – Reaction

When Angelika Byczkowski wrote her first column for National Pain Report, she picked a great topic. “How do you explain chronic pain to someone who doesn’t have it?”

The reader reaction was immediate, passionate and very personal.

By and large readers commented on our website and on our Facebook site in two ways – either by describing their own pain or by saying people who don’t have chronic pain, by and large, just don’t get it.

We watch for reaction to our stories and this one plainly ignited at least partially because the topic is so important to those who suffer from chronic pain.

Reader M. Morgan, who has endured it for 20 years, called pain “an evil, insidious thing. It destroys everything good in life.”

Wendy Buchmann’s description was raw and basic: “I describe my pain as being like the worst influenza you’ve ever had, coupled with several direct hits with a baseball bat every single day of your life.”

Sandy Sullivan thinks it’s a mixed bag, a supportive husband, a doubtful friend and a skeptical doctor.

“I always feel like I have to explain myself to my PCP and always worry he will not give me my very low dose of hydrocodone. 1/2 pill a day……he really has been good about it so far but the fear and apprehension remains. I a very good friend that thinks I should just “get over it “and that is so hurtful too. I am blessed with a wonderful husband who is very supportive.”

Another reader, who only called herself by her first name, Elizabeth doesn’t even try to explain anymore. “I’ve stopped trying to explain my pain to others and speak about it as little as possible because I find it an exercise in frustration.”

It was on the National Pain Report Facebook page were readers really shared.

Diane McCoy wrote: “One thing that I hate is the pain score of 1 to 10. This does not apply to chronic pain. The new laws only make things worse. Chronic pain rules my life day and night. Most doctors and even family members don’t come close to understanding.

Carolyn Lofton Orbach, who has had chronic pain for a quarter of a century, said for her husband, seeing was believing.

“Until my husband saw images of what is really going on inside my body (pix taken during surgery), he was unempathetic and dismissive of “limitations” the chronic pain forced upon my daily lifestyle. It very nearly ended our relationship.

Crystal Luzynski is not happy with the medical profession:

Unfortunately there are A LOT of medical professionals who do not understand; therefore many go untreated or under treated.”

Linda Gumenick thanked Angela and the National Pain Report for the article and summed up the situation this way on Facebook:

“There’s a saying with chronic pain or illness, “you don’t get it until you get it.” I looked very healthy (the invisible illness – intercostal neuralgia, myofascial pain syndrome, etc.) despite feeling as if I were being stabbed, electrocuted, and burned to death in my scapula and rib cage. I tried to explain the burning as if I had blisters between my ribs because people can relate to that. I tried to explain chronic pain as if you hit your funny bone and the pain just never stops. Etc. But I’m still dealing with so much anger at doctors who dismissed my pain as psychological or psychiatric in nature, and that there are so many insurance restrictions that people in chronic pain cannot get the necessary care that can help give relief or perhaps cure them, i.e., myofascial release, acupuncture, etc. Our medical care system is so inadequate when it comes to chronic pain. Chronic pain is so fatiguing, so challenging, it changes your personality. You learn who your true friends are and you find you can relate to other sufferers in support groups sometimes more than your friends.”

Thank you for your interest and reaction. We thought much of it was important to share.

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Authored by: Ed Coghlan

There are 4 comments for this article
  1. Jeffery Silvas at 10:03 pm

    I finally had back surgery and have a healing pain but before that my Doctor refused to treat my pain even though my MRI proved my pain was real. Just because about three years ago I abused pain pills I would get them were ever I could but I went through detox and do not drink anymore or abuse my pain meds. He wouldn’t understand that sometimes addicts need pain relief to we just have to be monitored closer my wife has my pain pills i don’t even know where they are I am taking them for a ligament reason. I had to change Doctors just to find one that agreed with me that even addicts deserve pain management. Thank you for listening

  2. Evi at 9:57 am

    Before I was diagnosed my gp told me that my pain might “just be in my head”. I got very frustrated but then realised, even if it is a psychological problem I’d still need treatment. Thankfully I demanded to see a Pain Consultant and was diagnosed. It took 3 years of test to get there though.

  3. Dennis J. Capolongo / EDNC at 10:11 am

    As I started to regain my strength and ability to walk after three years of being bedridden, I found a pain support group in my area that was much more than I had expected. They allowed free expression and open-minded discussion on the merits of chronic pain and its lack of definable characteristics. We would often be visited by well intentioned professionals that despite their greatest efforts to understand what our lives had become, would simply end up pitching their services to us while failing to comprehend our plight.

    So I devised a simple way for them to experience first hand what chronic pain patients must endure as we tried to function as normally as possible with our daily lives. I purchased a bag of spring-loaded clothespins and would invite them to place as many as they could on the exterior of their skin, with the exception of fingers as they conducted their presentation. Earlobes, facial cheeks, and necks were their favorites but many felt adventurous and would place them under their shirts and leg pants as well.

    The first presenters would almost always endure the pain, but would swiftly remove the clothespins at their conclusion. The last few were noticeably distracted and off their mark, losing the track of thought while searching for words. never able to make it through. After a few months of this, I found their comprehension of chronic pain patients had completely changed for the better. The lesson? It is impossible for those who have never experienced chronic pain to understand the demon it is.

  4. Mark Ibsen at 9:22 am

    We now live in a world where the written word has very little impact compared to a video.

    Many of the chronic pain patients I now take care of were a hot mess when they showed up in with drawl is severe pain pale color no doubt about it kind of pain.

    Video as much as I can, but I cannot find someone to tell these stories when they are acute.
    In Helena all the media we’re busy chasing some crazy militia members last Thursday when I called them.
    I’m exhausted by

    one
    treating pain patients
    Two

    defending my license and career, and
    three
    trying to document the stories so someone could actually give a shit about it!

    If someone could find a documentarian to help me tell the story it is very moving. So far I have failed.