12 March 2015

Health blogging, honesty and authenticity.

Bowl of salad

The impostor syndrome haunts me. "Is this my life? Am I really writing and speaking about my passions?", I sometimes ask. Am I qualified? Am I nice enough and a good role model at all times? I keep thinking I'll get caught out. Not that I think have anything to get caught out for, but I worry that someone will comment on something that I've written, saying 'I saw her once, she was really rude to this sales assistant'. I am flawed too.

I remind myself that people won't always like (which is different to won't agree with) everything I write, and sometimes I tire of having to validate that stigma and intrusive comments really do happen. But that's ok. Because I am ok with myself.

Sometimes I worry about being a health blogger - especially this week. It’s a huge responsibility to have people read about my life and take advice or comfort from it. I want to show my integrity.

There's a rise in health and wellness bloggers - many of which have reached celebrity status. And celebrities have now reached medical practitioner status. As my friend Anne Marie said, introducing this article, "get your medical advice from a doctor, not from a celebrity" (or blogger). These people are not qualified to dispense medical advice or treatments - they are social media celebrities.

The very wise Pip Lincolne wrote

"Being well-known does not mean you know well.” 
Ain't that true.

I worry that the alleged doubts of Belle Gibson's cancer and charity donations (and also the death of 'Wellness Warrior' Jess Ainscough, Pete Evans, and actor Charlotte Gregg's baby paleo book) will discredit genuine illness and certified health bloggers. Pete and these three women have online fame - many followers who believe in the lifestyle they're selling. As far as I know, they don't have medical or nutritional qualifications. They claim they've healed through food. (And Belle might not have had any illness to heal!) And that is alarming.

Lila Wolff wrote about how inauthenticity is harmful.
 "What's dangerous here is not just the people who damage themselves with their inauthenticity but the damage it does to those following, admiring and emulating."

Carly Findlay on a hill

If you are following advice from an illness or heath blogger, and you think something doesn't add up, check your facts. Ask your doctor. Seek qualified treatment before it does you harm. Emma Stirling, registered dietician, has written a great blog about reputable information on cancer treatment here.

I don't have cancer and I don’t practice alternative treatment over traditional medicine. But I do have a lifelong, severe chronic illness and people look to me for advice. I feel that I have a responsibility to you, my readers and social media followers, never to provide advice that might damage your health. I always write my truth, which doesn’t mean it will apply to all readers.(And I don’t write this to discredit myself, but in the interests of disclosure, I am qualified in Communications and eCommerce, and only have lived experienced with Ichthyosis and disability.)

I always want to be authentic and transparent. I want you to know that some of the donations for the Australian Ichthyosis Meet have now gone towards the Foundation for Ichthyosis and Related Skin Types. The me that you read on my blog and see on social media is the me in person. Sometimes I put some flowers in the shot for a photo, but it's all my life.

And I never want to sell you treatments or life-practices to help Ichthyosis (or any other illness). I won’t be paid to promote pharmaceutical products, or feature affiliate links to over the counter products. (Sometimes I will promote non-skin related products through a sponsored or affiliated post or ads, but I will always disclose up front.)

I am not a doctor. Or a psychologist. I can't provide a diagnosis. There are many types of Ichthyosis and there are many treatments that work differently for different patients. What works for me might not work for you or your child. And I don't want to risk that. And I will never claim that going to a hot spring or taking a juice cleanse will make you well. 

I believe in, and promote healthy eating, but that is just one part of health management. I never want to seem like a medical authority.  While eating whole foods makes me feel good (and has a positive impact on my skin), my Ichthyosis is still here - it’s not cured because I eat salmon and cheese regularly (they both give me GREAT skin!) Sure I can share what's worked for me, or how I cope emotionally, or write about my experiences of discrimination, all of which you may relate to, but in the end, people need to get the accredited help they need. I have written about my treatment regime, but I have and will always suggest you seek medical opinions before trying new things. I will also suggest you see a counsellor. 

There has been a few times that I have been contacted, urgently, to provide advice about a treatment for Ichthyosis, or even a diagnosis. When I have told them I am not a doctor, and that I don't live in their country so I'm not even sure if the creams I use are available where they live, and suggested they talk to a dermatologist, they dropped me like a hot potato. I was not useful to them.

Last year I was contacted by a woman who expected too much of me. She had diagnosed (and then undiagnosed) herself from my explanations of Ichthyosis. And she wanted more emotional support than I am qualified for, and when I told her I couldn't provide it to her, she said I'd disappointed her. She said I'd put myself out as a role model, and she saw me as a support person, but didn't provide. My heart sank. While I know I didn't fail her, I still felt as though I did. It upset me a lot.  

These examples are burdens on genuine illness and health bloggers. And they can hurt.

I admire those illness and health bloggers who are genuinely making the world a better place by responsibly sharing their stories online. And I am disappointed in those who take advantage of the vulnerable. There is no health blogger’s rulebook or union. I’m winging it. We all are. So I’ve made my own pledge to do the right thing by health bloggers, my community and my values.

Health blogger pledge

I am a health blogger. I will:

Be truthful about my illness, and accountable to the charities and causes I support. 

Maintain respect and privacy for the professionals who treat me.

Always encourage a healthy diet and lifestyle in conjunction with medical and psychological support.

Link to support groups that may help you.

Never claim a food or life-practice will cure you.

Never receive payment to endorse prescribed and over the counter treatments that I use for my skin (this includes affiliate links).

Write about what has helped my skin, but always provide a recommendation to seek advice from your doctor before trying new things.

Own my writing and my mistakes.

Acknowledge that all patients have different symptoms and levels of severity - and what works for me might not work for them.

Continue to foster a positive, supportive and educated online community.

Seek help if I am experiencing vicarious trauma from others sharing their stories.

Are you with me?


  1. Thank you for the integrity of this post, Carly.

    The incidents surrounding the personalities you referenced did disturb me. Pip did say it best.

    SSG xxx

  2. PS - thank you also for the wide ranging blogs you have in your sidebar.

    SSG xxx

  3. Fantastic response, Carly, but is never doubted you.

  4. Thanks for this Carly. Great work. I agree with your sentiments entirely. I recently got rapped over the knuckles by readers when I wrote about how I manage to track food and the required exercise for my conditions. I did think to myself it sounded a bit like an infomercial, but couldn't think of another approach to write it. One of the problems I had faced was limited advice out there on exactly how to follow my doctor's advice. I figured if I had trouble, so would others in my position, so I wrote about my solution to the problem. Some readers felt because my advice only suited some people on the broad spectrum of chronic conditions, I was sending an impossible message to those on the severe end of the spectrum. But that had been my problem: no information for those of us trying to delay our journey to the severe end of the spectrum.

    However, it did make me think about the sorts of disclaimers I need as opening paragraphs to future articles.

    Like you, I stick to traditional medicine and try to promote healthy eating, weight management and exercise (my conditions demand these). As a self-confessed comfort food eater, I MUST watch what I eat, otherwise weight gain will play havoc with my joints. Obviously other patients would, under stress, not eat enough but I can't write about that because I don't have any experience of being a food avoider.

    Balancing the information we provide can be difficult.

    I am going to steal your concept, because I believe it is a very good one and those of us writing about health challenges need to set these standards and let our readers know what to expect.

  5. Love this Carly, so important that people know where you stand.

  6. To be honest I feel it's sad to think things have reached the point where you feel you have to make a pledge like this. I think you're a source of useful, reasonable, and reliable information to a lot of people already Carly (even if they don't normally comment) and I think most of us can see your authenticity because you aren't putting yourself before us making any wild claims about cures etc :) You're great at what you do here xx

  7. Well done Carly, although I don't think anyone doubts your authenticity :)

  8. I'm with you Carly! This is a really important thing to discuss. I'm off to consider my own post on this subject. Hope you don't mind me linking back to this one. :-)

  9. This topic is something that I am quite passionate about. Really great post Carly.

    It is truly frightening to think that people take medical/health advice from individuals who do not have formalised training in what they are preaching and do not have the skills to appraise scientific literature. There's nothing wrong with reading something on a blog/forum and asking their health care professional about it, but to base their health decision solely on an unqualified individual is concerning.

    Everybody is a so-called 'health expert' these days. A couple of months ago, I decided to eat healthier. As soon as people saw what I was doing, they were giving me advice left, right and center. They were trying to be helpful, however what works for them does not necessarily work for everyone else. Their advice was based on their own experiences. I don't mind people telling me about their experience, however they should keep their advice to themselves.

  10. Love, love, love your pledge and entire attitude to this Carly!

  11. This is so great Carly! Not that I ever questioned you :)

    Everything going on of late makes me think about blogging in a different light - given my blog falls into the "health & wellness" category, I've really been thinking about my responsibility to my readers. Naturally I'm very clear in stating that I'm just writing about my experiences and don't give any advice I'm not qualified to, but when you are passionate about something sometimes you just want to share everything you find! :)

  12. Oh this is fantastic! I love your pledge. I love your honesty. I've followed you for a bit and have admired your strength and support that you've given so many. And it's so so important to have clear boundaries about what you can and cannot offer. Those that tried to take too much of you? Sadly it's their issue, not yours. As a psych, I'm always careful about what I put out there as I try to help as much as I can, but I also can't be responsible for people's treatment. It's a fine line, isn't it? Thanks for a fabulous post. x

  13. Carly, this is a very important post - yes, sad we had to get to this point, but responsible in light of recent idiocy.

    The point surrounding affiliate marketing is especially pertinent: so many 'wellness' bloggers make a mint financially from the sale of various products or for agreeing to out their name behind a product. We don't allow conventional registered doctors to make, sell and profit off treatment they prescribe - why should altmed practitioners be able to?

    Good job on the blog and on your advocacy.


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