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Marie

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?

Tags: chronic illness, food allergies, health activists, infertility, migraine, ra

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Ellen S Comment by Ellen S on April 17, 2009 at 11:50am
Lee, thank you for also posting this on the original thread - Do you own your illness?
Lee Rayson Comment by Lee Rayson on April 17, 2009 at 4:40am
Hi Ellen,

Thank you for your indepth review of my post.

So many questions. Well here is my attempt to answer them...

My definition of ownership is quite simple. It is the self acceptance that whatever ailment we have, has or will have a permanency in our lives. The longer we experience the more we accept it as part of us and we project it into our future. We always tend look outside ourselves for help, rather than looking within.

It is my opinion that unresolved experiences are the true cause of illness/disease/disorders. Acceptance of ill health assists in keeping the condition longer.

A quick question. Do you agree with your comment "that having a healthy, happy mindset is vital to overall well-being..."? As you said "Most everyone".

Genetics...what a heavy subject for such a small post. Let me ask you "IF we have unresolved experiences that manifest themselves physically, is it not then POSSIBLE to pass any unlearned lessons down to our children to resolve because we could not. Then, if still unresolved down through our children's children?" We do with our knowledge and our beliefs, don't we?

An interesting book on the subject on Genetics is "the Biology of Belief" by Bruce H Lipton, Ph.D It may give you a different perspective on genetics.

As for people "who take the opposite approach", I really hope for them that science will find ways to cure their physical ailments.

As for animals, I would love to ask them, but I'm no Dr Dolittle. I do talk to them, but I'm still having problems with deciphering WOOF from WOOF. Again I can only discuss from my experience. Recently our two Belgium Shephards, our 4th and 5th children, passed away. Lucy was 17, her mum Minx was 19. Reasonably good ages for shephards I understand? Minx was a mother not only to Lucy but also constantly watched over my 3 children. Once they had grown up, and moved out, and Lucy passed away, I think she lost her purpose for living and passed away. Something I see in the elderly. So in many respects animals are no different to us. They live with us and share the experience with us. As for Lucy's passing I have not, yet, been brave enough to look for the reason. Thankyou for this question as I am at peace with Minx's passing, yet the thought of Lucy still brings pain, I will now look at this experience and resolve it for myself.
As for animals, I can only say that they have their own "issues" and like us, anything left unresolved manifests itself negatively.

Independant Research, a good point and again thankyou. But how do I achieve independant research, sounds expensive. I am still trying to gain access to my own medical records, so at this point independant research may be a while in coming (LOL). Your comment has though been the decider in my decision to split my website into the 2 main areas that are the focus my purpose. It will be on the health side of the website where I will publish as many backup statements as I can. (Ah "Change" the one constant in my life...ha ha)

What is the problem with help and sharing? Isn't that the INTENT of this website, if not then I am indeed in the wrong place. Anything that is "outside the square" of our known reality is usually challenging and will therefore cause friction, but what will be the outcome if we don't examine new possibilities. For me I would still be on antihistamines and carrying an epipen (yuk). There is no fault in the person with an illness. The mind is simply producing the physical outcome of that persons beliefs. Unresolved experiences create a negative state, that manifests itself as a negative physical outcome. Blame, guilt, fear, anger and the list goes on, are all negative emotions which will have a negative physical outcome, especially when kept over a long period of time. Storing, growing.... Just waiting to errupt.

As to the comment "you think it may have worked", that is your perception. I know that "it has worked for me" and not just for allergies. I have also amongst other things reduced my weight to a trim 85kg down from 100kg. I have also seen the process resolve a number of other health issues in a growing number of people, but I prefer to talk from my experience.

You state that "What works for one person is not necessarily going to work for all". I totally disagree with this as the concept of Health by Association is based on unresolved experiences in our life manifesting themselves as negative physical outcomes. A very simple example of this is to think of something sad, a memory, a past experience. Then watch your physical expression, or manifestation, of that experience. Does your face change? Do you cry? Are these not physiological reactions? Now think of something happy and you experience a different set of physiological reactions (what a terrible way to describe a smile or laughter!). We all "work" (a terrible way to describe life) this way.

And finally about the link to "Sorry, but when did proselytizing one’s unsolicited cure-all become OK?" Ouch, that seemed a little harsh when it is my intention to share knowledge. But in fairness isn't this what everyone does? Promoting their own experience.

I hope this answers your questions or at least creates some new awareness that you may like to consider.

Cheers

Lee
Sarah Comment by Sarah on April 15, 2009 at 5:12pm
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."
Ellen S Comment by Ellen S on April 15, 2009 at 2:49pm
There are great questions here, and I think there are many answers...

Cure is a big word. It is a word that puts me off and even scares me a little. A cure is a claim that the problem will vanish.

Everybody seems to have a cure for Migraine and Chronic pain. Thyroid is another issue that have plenty followers of specific treatments that supposedly 'cure' the trouble. I always listen when someone has something to say... who knows, maybe there will be some little tidbit of info included that I can follow up on or use myself.

I think most people are simply sharing what they know about your experience, trying to connect with you and be helpful. I love that they are compassionate enough to want to help, and I encourage that. Rarely does someone have something to say that I haven't heard before. This is disappointing, but I'm willing to take out a minute or two to hear it just the same.

Do I feel I'm being held responsible for my chronic illness? Sometimes. The unsolicited advice is welcomed, but blame or inuendo is not, no matter how subtle or outright. How do I deal with it in my own life? I'm rife with research articles to quote to stop the conversation if it goes into responsibility-land. Knowledge about my health issues is my shield.... and my sword.

In participating in conversation where I give information to those seeking help, I try not to get into responsibility, but it's difficult. There is a certain amount of responsibility needed to be a healthy person. Responsibility is not blame however. Encouragement is important. Where to draw that line can be difficult I think. I always hope I am able to convey compassion and a true desire to help however I can. It's sad when people are otherwise motivated, isn't it? People can be cruel indeed...

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