22 November 2014

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"


"* 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.)











  1. Carly: this is not something you needed to be done on a Saturday night!! But thanks to your commonsense and experience along with living with and managing a condition which you've so expertly described you've needed to counteract the wordy-superficial article by SW. I've been sceptical of her guru like status since she became the "no sugar" author. I have no time for extremism or one-eyed views but when the words are out there for the less-well & vulnerable who do not have a voice like you do or an opportunity to consider "is this right" then I applaud you doing something in writing to call SW to account for her published views.

  2. Great post, Carly. Sarah Wilson comes out with ridiculous statements at the best of times, but this one really took the cake for me. It kind of goes with that whole stupid "blame culture". You're sick what did you do to get that? You must have eaten wrong/not exercised/not found Jesus/gotten stressed/not looked after yourself.

    Love what you've written here. Here's hoping Sarah reads it.

  3. Thank you Carly. I was in the process of trying to write something similar, but you covered it to perfection. I've shared this post over at my blog (arthriticchick.com) because you said everything I wanted to say, far better than I could have. Thank you.

  4. I'm with you Carly. Thank goodness you can use your voice to tell it like it is. It is unfortunate that unfounded claims get publicity. Keep up the good work. Den xxx
    Ps Hope SW doesn't come anywhere near a kids' cancer ward.

  5. It saddens me to read statements like the one by Sarah Wilson, we get similar rubbish spouted at us in the autism community. For people like Wilson such statements result in an interview or a paycheck and then they move on to the next hot button issue where they belittle or demean another group of people to fill up airtime or column inches and they never think of these people again. They never think that other ignoramuses read their idiot comments about "self love" (with us it has recently been camel's milk) and spout them at us and that we have to explain that people like Wilson do not do their research etc. We do this for a week and then someone else touches our communities with their faux concern and sensationalised headlines. I am getting quite sick of it, as I am sure you are. On reading the comments under Sarah Wilson's article I find that a REAL doctor has told her she (Sarah) has Hashimotos Disease. I hope she combines self love with a visit to an endocrinologist.
    And where does this theory about self love put men with auto immune diseases?

  6. Wow, I can't believe anyone would be such an idiot as to write that comment about self-hared causing autoimmune diseases. Thanks for calling her out on that. I have autoimmune diseases in my family too - my brother has type 1 diabetes, my uncle died of type 1 diabetes, and I have Hashimotos thyroid disease myself. I'm pretty sure self hatred did not cause out genetic diseases... Seriously, good on you for writing this, I hope she reads is and realises what an idiot she sounds like for spouting crap like that. Maybe we can start a new hashtag - #lovemyselfandamstillsick.

  7. Here here Carly! That article bugged me to no end. Thank you for putting my thoughts on paper too. I liked some of what Sarah Wilson had to say in the beginning, but it's getting crazy now. I hope she reads your blog & thinks about the message she's really sending. Especially to those with genetic issues, who may already have low self esteem.

  8. Well I have an autoimmune thyroid disease, as does Sarah Wilson, and I am certain it is not caused by self-hatred of any kind. Thyroid problems run in my family on both sides and I was first diagnosed at 27, without any symptoms other than a lump in my neck which had to be surgically removed and this was how my disease was discovered. Maybe she has another book coming out soon because I can't fathom where she gets this idea from and it seems like a statement to raise publicity. On another note, replacing sugar with rice malt syrup is not giving up sugar. Just my opinion and this was a great blog Carly.

  9. I have never read such a load of rubbish in all of my life. I pity the people who follow her with this and agree with her.
    My newborn baby has ichthyosis.... did she get this due to self hate? I think not! Self love is not going to heal her either.... though at a few months old, she has no idea or concept of what that would be anyhow!
    I can't stop shaking my head after reading this crazy article.

  10. Carly, you are a rockstar. Like you, I suffer with chronic illness. This year I have been sicker than I have ever been, yet happier than I have ever been. Happier because I have returned to my love of writing, I have started to do something meaningful by blogging for my illness community. I am exhausted by the number of 'cures' I have suggested to me by well meaning people. None of it changes anything for my diagnosis or prognosis. Damn, I wish it would. And I wish Sarah Wilson had paused and considered the entire spectrum of population she is talking about with her wishful ideas. If only. I'd open a self-love clinic and we'd all be cured. Sarah Wilson, if you are reading this, please know that the only thing causing me anxiety is the dangerous notion that our own fears cause our illness. My illness is what causes my fears.

  11. I say this with respect - I think you have missed the point of her article.
    As someone with an autoimmune disease and who is studying to be a doctor, I can completely understand where Sarah is coming from. Yes, not every chronic or autoimmune disease is the result of self-hatred (type 1 diabetes for instance) but many do come about as a result of mistreatment of our bodies, for whatever reason.
    This is a woman who is sharing her journey, much like you have shared yours on the internet. I don't think she is victim-shaming, rather sharing her experiences and I think you'd find that hers is quite similar to many other people in her internet circle.

    1. Totally agree with you Tina. Sarah is guilty of being a bit dumb and insensitive, but she didn't set out to victim-shame anyone.
      Many diseases need to be triggered somehow, our genes don't necessarily mean we will develop X disease. Self-hatred is just one way that might happen. Sarah just needed to be more thoughtful with what she wrote, but her ideas do have merit.

    2. I agree... Carly you have missed the point of her article and taken out parts that suit your purpose of the blog post. I think Sarah Wilson is brave enough to discuss ideas that are controversial as are you Carly. I think she opens the doors for discussion and am grateful that she discussed alternative ways of looking at things whether it be auto immune diseases or sustainability... I respect your choice to follow the treatments that you do but you should also respect the choice others have at looking at things such as different ways of thinking and alternative medicines.

  12. Great article Carly. I'm pretty tired of these "experts" with absolutely no qualifications making completely unfounded statements. They seem to pop up a lot, even certain bloggers who talk about shunning medical treatment and healing cancer naturally. It's irresponsible and can be down right dangerous. Unfortunately these people are in a position of influence over a lot of people and they just spout whatever opinion they feel like without any scientific backing. Thanks for calling her out on it.

  13. Yeah, Sarah's article made me immediately think of infants with type 1 diabetes.

    I used to read Sarah's blog regularly, but felt as though the tone of her writing changed around the time she started with the sugar/paleo stuff.

    Even then, I still used to visit her blog from time to time to have a read, until I read the post about her bike accident (http://www.sarahwilson.com/2014/10/the-bike-accident-i-had-to-have/) which had this statement:

    "We are only ever dealt what we can handle"

    which made me immediately think of the huge number of people who have committed suicide (including a couple of close friends of mine).

    In their cases, they were dealt more than they could handle...so her statement doesn't make sense.

    If she had've said "I believe that I'm only ever dealt what *I* can handle", then it possibly wouldn't have come across as so sanctimonious and naive.

  14. Guilt does not heal, nor does it make one feel better. Being realistic about our problems, whether medical or emotional, goes much further towards giving us a satisfactory life. It may not always be filled with indescribable joy, but it doesn't mean we don't love and respect ourselves. Thanks for your positive perspective.

  15. I completely agree with you and hate that Sarah Wilson is perpetuating the idea of victim blaming. It's so dishonest and unfounded to go around spouting false information on "cures" and "reasons" why people are sick. This is just like an article I read a while back that claimed that autism was caused by poor diet and some other nonsense. Yes, I believe in positive thinking and healthy eating, but no amount of prayer and good will are going to make me suddenly grow a hand. (Believe it or not, I've had religious people come up to me in the past and claim that one day, if I pray hard enough, God will let me wake up with a fully formed left hand.) REALLY???? WHY WOULD YOU SAY THAT GARBAGE TO A 7-YEAR-OLD????!!!! This kind of thing encourages the view that disability and chronic illness are inherently BAD and need to be eliminated. While I wish I could eliminate a lot of the pain associated with chronic diseases, I am not unfulfilled or unhappy due to my physical difference. And to suggest that we should be reaching for this ableist idea of perfection is quite offensive and downright stupid. Great post!!!

  16. Oh pul-lease! People like Sarah Wilson don't live in the real world. So caught up in their world of self-help and gurus to the stars that they've lost touch with reality. What we don't need is more victim blaming. I just loathe people like this espousing such nonsense. It is not at all helpful. Great post Carly.

  17. Preach Sistah!
    My own sister has CP (cerebal palsy) and people have the balls to come up to her face and tell her it's either a special blessing from God or it's a manifestation of sin. Often, they tell my mother directly that it's her sin and her fault that my sister is disabled.
    Can self- hatred make a difficult situation even more difficult? Yes! But that's certainly true of anyone's life and to imply that fully able and healthy people have greater self-love is just offensive.


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