What's love got to do with it? I don't agree with Sarah Wilson's idea that self-hatred is making us sick.

I have a chronic illness and I love myself sick. Sarah Wilson believes self-hatred is making us sick.

Sarah Wilson describes herself as a "blogger, author and wellness coach". She is perhaps best known for her editorship at Cosmopolitan Magazine, host of season one of Masterchef Australia and I Quit Sugar evangelism (oh they all seem like a contradiction don't they?!).

Note that I didn't list qualified nutritionist or medical practitioner in there? Because she's not.

She wrote a news story titled 'Is self-hatred making us sick?'

She writes:

"When I’m asked, as I often am, "What caused your disease?" I have to be frank and say – once all angles are ironed out – everything points to … anxiety. Or as I like to put it, a profound, visceral, itchy dis-ease with myself."

This story was an extension of a blog post titled 'could female self-hatred be the real cause of autoimmune disease?'

She's quoted Dr. Habib Sadeghi, who she describes as "an American 'healer to the stars'". Dr Sadeghi believes self-hatred is the real cause of chronic disease in women

From Dr Sadeghi's Ted Talk, Sarah deducts:

"Self-hatred causes autoimmiune disease, which, boiled down, is the body attacking itself"

Furthermore:

"* So how to heal? With self-love. I rarely know what this means and it mostly seems a bit "motherhoody" to me. But I can see how key it is. You can do all the tests, elimination diets and treatments you like, but, boil it all down, there’s always a sneaking feeling that it’s more than the gluten or the toxin or the hereditary predisposition. Right?

Sometimes I sit and really feel what’s behind a flare up. The only feeling there, behind the pain and shitiness, is a cringy, self-flagellating, forward-lunging anxiety. It’s always there, whatever the flare. The same feeling"

I have a chronic illness and I love myself a lot. I look in the mirror and see a beautiful smile, and I'm proud of my accomplishments. The cause of my chronic illness cause is genetic, not due to self hatred.

Sarah, I was born with Ichthyosis due to a gene mutation. Ichthyosis affects my skin and also my eyes, ears, temperature control, metabolism and immune system.

While I am happy, I also know a lot of people with Ichthyosis who aren't happy with themselves and haven't accepted the condition they were born with. This hasn't caused or worsened the condition. And many parents blame themselves for passing the condition on to their child. Another source of blame is the last thing they need. 

The National Institute of Arthritis and Musculoskeletal and Skin Diseases explains the genetic cause of Ichthyosis:

"The inherited forms of ichthyosis are caused by mutations in genes passed from one or both parents to a child. In some cases, the parents themselves do not have the condition, but carry the genetic mutations."

My form of ichthyosis - Netherton's syndrome - was caused by the Spink 5 gene:

"Netherton syndrome is caused by mutations in the SPINK5 gene. This gene provides instructions for making a protein called LEKT1. LEKT1 is a type of serine peptidase inhibitor. Serine peptidase inhibitors control the activity of enzymes called serine peptidases, which break down other proteins. LEKT1 is found in the skin and in the thymus, which is a gland located behind the breastbone that plays an important role in the immune system by producing white blood cells called lymphocytes. LEKT1 controls the activity of certain serine peptidases in the outer layer of skin (the epidermis), especially the tough outer surface known as the stratum corneum, which provides a sturdy barrier between the body and its environment. Serine peptidase enzymes are involved in normal skin shedding by helping to break the connections between cells of the stratum corneum. LEKT1 is also involved in normal hair growth, the development of lymphocytes in the thymus, and the control of peptidases that trigger immune system function.

Mutations in the SPINK5 gene result in a LEKT1 protein that is unable to control serine peptidase activity. The lack of LEKT1 function allows the serine peptidases to be abnormally active and break down too many proteins in the stratum corneum. As a result, too much skin shedding takes place, and the stratum corneum is too thin and breaks down easily, resulting in the skin abnormalities that occur in Netherton syndrome. Loss of LEKT1 function also results in abnormal hair growth and immune dysfunction that leads to allergies, asthma, and eczema."

There is currently no cure for Ichthyosis, but I can't tell you the amount of times people have offered me Noni juice, magic pills, prayers, happiness retreats, and advice about elimination diets to cure me.

This year has been the best year of my life. Travel, meaningful day job, an engagement and awards, and I've loved myself sick. I've got so much love around me. But it's also been the sorest. I can't tell you how sore I am, even now. Days missed at the gym. Hard to get up in the morning. Bloody, painful legs. No amount of happiness will make me feel better physically. It's up to my body to heal itself.

I've never told myself I'm ugly or no good or self harmed. And even if I was self loathing it would not change my Ichthyosis.

I take pride in my appearance, further myself in my career and education, surround myself with amazing people and reach for the stars. And guess what? My face is still red.

I believe in the power of positive thinking but I'm a realist. I believe in the power of positivity in addition to a good medical team and plan, and a realistic perspective.

And a chronic illness like mine means there will be times I am down. That I wish this wasn't my lot in life. I don't want to be stared at like a freakshow. I don't want to be in pain. And that level of 'negativity' is perfectly normal for people living with chronic illnesses.

I don't want to be told by someone with NO medical qualifications what's caused my genetic, rare chronic illness. What's love got to do with it?

Ichthyosis wasn't caused by a lack of love. My parents love each other very much - they moved countries to marry.

Ichthyosis was not caused by Jesus or sin. (The burden that muse be on religious believers thinking they've sinned to cause illness must be unbearable.)

Ichthyosis was not caused by diet or environment. (Of course what I eat helps me to manage my skin better. But removing a whole food group will not cure it. The same goes for the environment - shady, low allergy areas are best for my skin.)

Neither can Ichthyosis be cured by love, faith, food or positive thinking. I can change my lifestyle but I will still have Ichthyosis. I will still have red, scaly, painful skin.

My friend Camille has an autoimmune condition called Hypogammaglobulinemia - also called CVID. She was on the lung transplant list for 18 months. I never heard her utter a word of self hatred. It took a transplant to save her life, not a positive attitude. When I read Sarah's attitude towards chronic illness I feel for people like Camille.

Sarah has a dangerous message to be spreading, especially to a large and maybe vulnerable following. She's dismissing those with serious illnesses, shaming them into thinking their attitude is not positive enough to make them well. This evangelical movement that Sarah has started is worrying. It's medically unsubstantiated and belittling to medically diagnosed conditions.

Her writing about self-hatred is victim blaming. It reeks of harden the fuck up. And the chronically ill don't need this attitude. We need compassion and understanding and the permission to manage our conditions our way.

If you're desperate in finding answers and treatment for your chronic illness, please go see a doctor.

(Postscript - while I am a health blogger, providing information, advice and support to the ichthyosis community, I've never made unsubtantinated claims. My story is based on my personal experience and I acknowledge that everyone manages the condition differently. I am not a doctor or counsellor and always encourage blog readers to seek professional, qualified help for their conditions.)