Yes, I’ve tried that too: When well-intentioned advice hurts

Laura Kiesel
Laura Kiesel, Contributor

There’s a certain response I have come to expect whenever I share with someone that I suffer from chronic pain. “You should try acupuncture or yoga,” the person will say, often without asking me first if I have actually tried either.

I have learned to take such suggestions with a grain of salt, seeing them for what they are: a well-meaning, if usually uninformed, attempt to help me get better. But it’s hard not to feel slighted by these responses, even if the underlying intentions are sincere. When the hair-trigger reaction to me sharing my medical issues is usually to automatically recommend some supplement, diet, or exercise regimen I should try, I begin to feel my pain is being undermined by an assumption that I haven’t worked hard enough to defeat it.

For the record, I have tried acupuncture… many times. In fact, I am fortunate that my health insurance completely covers up to 20 visits to the acupuncturist per year, a benefit of which I take full advantage. My insurance also covers chiropractic and osteopathic care, and I make sure to max out my annual allotted visits. Many are not so lucky, as these services are often not covered by insurance and can be too cost-prohibitive to pay for out of pocket. Chances are if a treatment option exists and if I can afford it, then yes, I’ve tried that too.

There is a myth that when people have persistent medical conditions, that it’s the result of having an unhealthy lifestyle. As for me, I am a nonsmoking vegetarian who eschews caffeine and sugary soft drinks in favor of filtered water and fresh fruit. I barely drink alcohol and stay out of the high afternoon sun. I always wear my seatbelt. Before pain became a daily reality for me, I was an avid hiker and swimmer who enjoyed cross-country skiing, rock climbing, rollerblading, dancing, and riding my bike for miles. And not only did I go to yoga class on a weekly basis, but I was a star pupil, famed for pretzeling my body into positions even the instructor couldn’t accurately imitate. Nowadays though, my physicians have advised me against practicing yoga, as it often causes more bodily damage because I have connective tissue disease (and in fact, yoga may be one of the culprits that incited my chronic pain).

Disease doesn’t always follow a necessarily linear or logical path, or at least one that is plainly detectable. In my case, chronic pain became the fallout of an accumulation of issues that began even before birth: a club foot defect that required several surgeries in infancy, and left me with a stunted left leg that led to structural malalignment in my body that — combined with connective tissue disorder — set the stage for premature deterioration in my body. But worse than the way my body was punishing me for something I couldn’t control, is having to deal with society’s constant questioning of the validity of that pain.

Anyone who suffers from chronic debilitating illness for any length of time can attest to the lengths they have gone to quell it. In my chronic pain support group we share long lists of medications and procedures (ranging from things like injections to major surgeries) we have tried. We have often sought consultations from countless health care providers that run the gamut from traditional to holistic in our desperate search for solutions. We compare notes on diets we have undergone, from gluten-free to vegan to the carnivorous “paleo” diet. We offer opinions on what supplements and herbal formulas are legitimate and what amounts to snake oil. Overall, most of us have stitched together a network of treatment protocols, prescription drugs, and caring providers that help us manage the pain as best we can and in some cases, even restore some of our functionality. However, none of us has found a miracle cure, something that reverts us to our former healthier and pain-free selves — that is, for those of us who ever had such selves in the first place.

While I think there is value in proposing solutions, I would advise that those with chronic pain sufferers in their lives resist the urge to make recommendations. Rather, take the time to listen and empathize. That alone might be more healing than any drug or diet.

Comments:

  1. Anonymous

    Thank you Laura for expressing so well what those of us who suffer in pain every day go through with our friends and relatives who are trying to “help.” At least every two weeks I hear from someone about some kind of a “miracle” they have heard about from someone or somewhere…

    Thanks again for your blog post. It helps me not to feel so alone.

  2. AB

    Thank you!

  3. Kathleen McGrath

    This is an excellent post. So excellent that I must resist the urge to send it to everyone I know (a slight exaggeration) and take the gentle advice instead. So many of us resist this “empathy” advice that I’m likely to think it is a sign of another malady.

  4. Kat

    Thank you for writing this. My experience exactly. So many people, suggesting so many things, as if I haven’t done any research myself or even tried the most basic things. And it seems in our culture that if you haven’t managed to ‘fix it’ that it is somehow your fault. Would love to know what you say to these people who suggest things, as it would be great to have a response that both thanks them, but lets them know that future suggestions are not particularly welcome!

  5. Jeanne Jackson

    Thank you for this post. I have experienced the same thing. A hug would be a better response!

    • Minta Keyes

      A hug, very gently administered. My daughter has a connective tissue disease called Ehlers-Danlos syndrome and even a hug or hand squeeze can lead to subluxations or dislocations. She hated passing of the peace at church because some people don’t understand their well wishes lead to pain.

  6. AP

    I appreciate this concise post and the good advice, which is so easy to forget, whether it’s about chronic pain or any other trouble a friend is having. Of course, as the listener, we want to do whatever we can to alleviate our friend’s struggling and pain. It’s so helpful to hear how that comes across. I’m sorry you are suffering like this. Best wishes.