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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