Health blogging, honesty and authenticity.

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."

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.

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?