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How do you respond to health advice?

I recently came across Sara Nash’s blog on MyRACentral and wanted to share a post I just loved: Bugged.

The money quote, for me, is: “Sorry, but when did proselytizing one’s unsolicited cure-all become OK?”

Sara gets at something we all deal with as Health Activists and members of online health communities–there are always people out there trying to push their cure.

Sometimes this happens in obvious ways, a snake-oil salesman (or woman) trying to sell their panacea. Sometimes it comes from the people we least expect–well meaning friends or family members, convinced if we would just give X (yoga, vitamins, the newest drug, you name it) a try, then our health problems could finally be resolved.

I tend to think that most of the time, all these people mean well. They’ve found something that has worked for them, and they want to spread the word; or they read something somewhere and want to make sure that we know about it too. As annoying as that can be, it’s still a pretty well-intentioned gesture.

What I think gets to be so hard about this unsolicited advice (and I think Sara really hits the nail on the head in her article) is that we, as patients, are somehow, subtly, responsible for whatever health conditions we’re living with. Whether it’s Rheumatoid Arthritis, as Sara discusses in her article, fertility issues, migraines, mental health, food allergies, or another health condition, even the most well-intentioned advice can imply the patient is to blame. I think this only adds to the unnecessary shame that many people feel over their health issues and can actually do more harm than good.

Thinking about all of this leads me to two questions:

How do we, as Health Activists, encourage people to seek out the care they need, without reinforcing any ides of blame or shame?

How do we, as Health Activists, respond to unsolicited advice, whether it’s directed at us, or towards fellow members of our online communities?

My personal take is that this sort of advice is most appropriately shared when it’s been asked for. I’m generally content to ignore any unsolicited health advice that’s thrown my way, but it’s also important to me that others feel confident they can participate without being bombarded with advice they may not need or want.

What have your experiences been? How do you answer these questions?

  • Caroline

    At this point, I ignore all advice by non medical staff – or anyone who is not actually treating me. I have learned all patients and medical cases are different. Its one thing when someone is getting a cold and someone says try some vitamin C or cold remedy. Its a completely different story with cancer or other chronic/severe issues. I have a friend who constantly tells me to do what she did for her back or her mother did for breast cancer 15 years ago. I was told to stay away from chiropractors for my back and medicine has progressed a great deal since her mother’s diagnosis – and our course of treatments are different. She means well but is off the mark. I just smile and say thanks but no thanks.

  • Sara

    Hi Marie,
    Thanks for following up on my article, Bugged! You raise really great points about this on a broader scale. It’s difficult to walk the line between wanting to be open and receptive to other people trying to be helpful, and putting your own needs best. I hope others will share their comments and thoughts on this! I don’t think it is talked about enough.
    Sara

  • Sarah

    This is copied from the blog that was posted in the community. Wanted to keep the discussion going !

    Ellen took some words right out of my mouth: “a cure is a claim that the problem will vanish” and that scares me, too. I live with chronic pain and honestly don’t believe that there is a *cure* for it. I do believe there are treatments that will relieve me fully of the pain, but if I don’t continue those treatments, I go back to being in pain continually. It’s clearly not cured!

    I, like Ellen, read the stuff people write even when it’s unsolicited, as it might hold a piece of information I didn’t know before, or give me an idea on a new treatment idea. I don’t, however, take it without a grain of salt.

    I absolutely connected with Sara’s point when she wrote “when someone informs me that the ‘real’ problem behind my RA is my stressful lifestyle, instead of finding myself inspired or comforted or hopeful, I find myself wanting to puke.” I have received that response from talking about my pain condition, too; “it’s just stress, calm down and you’ll feel better.” More often than not, those people don’t know that there is a clear chemical connection to what is going on inside my body and that while stress my contribute to the pain, it isn’t the CAUSE of the pain.

    Since I’m also very active in my church, I continually hear that my pain “is because of sin,” or am always being told “pray and Jesus will heal you,” and I have people who look down on me for taking medication to ease my pain. Let me tell you, I’ve been praying for pain relief since it started. Prayer isn’t a cure-all. I’ve been anointed with oil by the elders at my church twice and while my heart pain eases, my physical pain does not. It’s *not* just spiritually related and I get frustrated explaining that to people at church, so I oftentimes just don’t even mention it anymore. That’s not quite how I know I should be experiencing my fellow church members, but it happens with some of them. (Others, however, are incredibly supportive of all the methods I use to treat my condition!)

    I think Sara really gets it when she says “Sharing experiences is important, but respecting other people’s experiences and subsequent choices is also important.”

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