You’re ill because you don’t love yourself enough & other stories

I haven’t written a blog post in a while, but every so often I read something about autoimmune diseases that will make my blood boil and drive me to rattle off a response. This is one such occasion.

I subscribe(d) to Goop, Gwyneth Paltrow’s lifestyle newsletter. When issue 14 pinged into my inbox, featuring Dr. Habib Sadegh’s piece on Emotional Erosion, I experienced the familiar deja vu of being faced with yet another crackpot theory about autoimmune diseases being caused by the sufferer’s internalized negative emotion. I’ve talked about my opinion of this over used metaphor in my blog post Heal Thyself? The Fallacy Of Mind Over Matter. I think it’s about time we were disabused of this blaming hypothesis that puts the cause of illness firmly on the shoulders of the sufferer. It needs to be challenged.

I toyed with just letting it go without comment but I’m too stubborn for that – probably why I’m ill right?!

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feedback@goop.com

Dear Goop

I have an autoimmune disease. I have been gravely ill. I have spent years of my life having surgery and recovering from it.

But I don’t hate myself.

I think I have dealt with these difficult and traumatic circumstances with resilience. With the support of my family, husband and friends, I have been able to face the challenges of my condition with dignity. I am proud of myself.

But Dr. Habib Sadegh’s piece on Emotional Erosion in the latest edition [#14] of Goop would lead people to think otherwise.

The theory works on the premise that women are taught to suppress emotion and to subtly hate themselves. This, Sadegh purports, is the reason for the high prevalence of autoimmune conditions in women.

I believe it is uncontained emotion that holds the secret to healing all chronic diseases, especially for women…..  We’re constantly putting women up against standards they can’t possibly meet. When you can’t be the ideal wife, mother, girlfriend, teacher, cook, church volunteer, corporate executive and activist at 20 pounds below your healthy body weight, what’s left but to silently (and subconsciously) hate yourself because you’re not perfect?’ –  Dr. Habib Sadegh’s theory of Emotional Erosion

I have several objections. Firstly Sadegh’s theory is reductionist – it reduces women to a single people-pleasing type who are buffeted by media and societal pressures into a state of self-hatred, anxious to live up to impossible media driven norms. It does not consider other models of gender. It focuses on white, straight, western ideals – different cultural, sexual and gender paradigms simply do not get a look in. It also perpetuates the myth that women are the more vulnerable sex – to disease, but by association most of life’s ills – because they are so emotional. Men are less vulnerable presumably because they are purely rational beings.

And what about all those men who suffer from autoimmune diseases? Does illness work differently for them or do they hate themselves too? What’s their problem? What about children who have autoimmune diseases?

Secondly,  I object to Sadegh’s lazy use of an extended metaphor:

‘I believe that this subtle, relentless, uncontained self-hatred is at the root of the autoimmune disease epidemic in women. How else would you personify a body that’s attacking itself as the enemy?’  – Dr. Habib Sadegh’s theory of Emotional Erosion

Personification is not science; it is a literary device. It may ring true with many people, but it is a sweeping generalisation that lacks true rigour and is more suited to the pages of a novel than the arena of health.

For me though, the most worrying implication of Sadegh’s theory is that despite the intention to increase female self-love, it actually induces guilt and self blame:

‘Bion and I would agree that the uncontained self-hatred that gives rise to autoimmune disease needs to be contained with self-love.’ – Dr. Habib Sadegh’s theory of Emotional Erosion

This puts the responsibility for disease back onto the shoulders of the autoimmune sufferer. It says that you, as the female autoimmune sufferer, have a chronic health condition because you have turned emotions in on yourself and literally caused your immune system to attack your own tissue.

You have made yourself ill.

So let me get this straight, I subconsciously hate myself more deeply than all of my other female peers – and definitely more than the men, who don’t hate themselves at all. That’s the reason I’m ill. If that isn’t a stick to beat myself with, I don’t know what is.

It’s all my fault for not loving myself enough!

Give me a break. I love myself enough to reject that blaming ideology.

As yet, science has not identified the sole cause of autoimmune conditions; perhaps there is no one cause. Currently genetic factors and environmental triggers are thought to play a major role in the development of autoimmune diseases. [A M Ercolini and S D Miller, The role of infections in autoimmune disease]

I for one, would much rather put my energy into supporting and promoting the work of talented medical researchers – those people working to identify those environmental and genetic triggers that cause autoimmune diseases – than attribute it all to women not loving themselves enough.

If we do that, hopefully one day we might come up with a cure.

Best Wishes,

IBD&Beyond

This email will feature as a post on my blog:

https://ibdandbeyond.wordpress.com

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NoReply@goop.com

Dear goop reader,

Thank you so much for your email.

Unfortunately, goop receives a very high volume of comments each week and our small team is unable to reply to each individual email.  However, we read all emails and are always very happy to hear from you. We’ve taken your thoughts into account and are thankful for your feedback.

All the best,

The goop Team

– – – – – – – – – – – – – – – –

I’m sure it’ll get to Gwyneth eventually….

OK, so maybe I won’t change the world with this email but it’s all about small steps people, small steps.

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6 responses to “You’re ill because you don’t love yourself enough & other stories

  1. This is great! What a shame they didn’t take the time to formulate a reply. Hilarious to link autoimmunity to self-loathing though! I was recently told by a ‘friend’ who is a nutritional therapist “if you cut out gluten and dairy, your thyroid antibodies will disappear.” So I can do that for a year and if my antibodies haven’t come down I can go back to eating it? “No, it doesn’t work like that. But if you don’t cut them out, once the antibodies have destroyed your thyroid they will start on something else”. Well, my dad’s sister had MS… “Oh, well you absolutely must cut out gluten!” That’s the last time I meet up with her for a coffee.

    • you may want to consider your friend’s advice – for some people, this is actually true. i have hashimoto’s and i get severe thyroid swelling (to the point that i have trouble breathing) beginning 4-6 hours after i eat certain foods, accompanied by other wonderful flare symptoms like joint pain and abdominal distension. you can see my swollen thyroid gland easily. i thought it was a food allergy (ige-mediated) but i was tested and was negative. one doctor told me it was asthma (it wasn’t – an immunologist ruled that out too). my current doctor put me on an elimination diet to help me determine if any of my symptoms have triggers, and i was able to pinpoint grains (not rice though). dairy is fine for me (i don’t drink milk anymore, but i eat butter and cheese). a blood test also indicates that i have problems with gluten (i already knew that from the elimination diet though). since i changed my diet, my flares happen less frequently and are not as bad as they used to be. i am not cured. but i feel much better and am slowly regaining my life. i don’t think your friend is trying to judge you, though she is definitely oversimplifying it. for some people, this is not an effective treatment option. but as someone who has experienced significant relief from this approach, i would definitely recommend trying it. it is not my intent to judge you either – i just want you to know what it helped me, just in case it helps too (or anyone else who reads this).

      as for the article, that is very frustrating. we are not weak, self-hating victims. people with autoimmune disorders deal with enough without having other people in the community blaming them, marginalizing their experiences, and telling them to just “be more positive”. i experienced frustration and depression, but it was because i felt it was my fault that i couldn’t pay attention at work (or school) or get myself out of bed on time in the morning. after i was diagnosed, i stopped beating myself up. the self-hatred can be very real, but is NOT the cause. and you raise an excellent point – women are not a monolith. all of us have different experiences. some people – like yourself – don’t beat themselves up at all.

      and is it really so surprising that some women feel this way after years of being referred to therapists (or just flat out dismissed) instead of being taken seriously? of course some women are angry at themselves – they have doctors telling them for years (sometimes decades) that it IS them. part of what has gotten us into the mess is the perception that women are emotional and weak. it is a very dangerous thing to be spreading. i also worry that some women will not seek proper treatment if they feel that it is a problem with their attitude and not their immune system. someone with the ability to reach and educate so many people should really do a better job. shame on her. thanks for posting this blog. people need to speak out about this.

      • Thanks for taking the time to comment!

        Absolutely – women are undermined and disempowered in so many ways..

        I also agree that managing symptoms through diet is great if it works for you – I would much rather do that than take drugs but unfortunately my condition hasn’t responded particularly to that approach. I do avoid certain foods that make my symptoms worse like coffee, alcohol and wholewheat – I spent years trying to work out my triggers. But sadly for me there was no real consistency between flare ups and diet.

        I’m very glad you have found a way of managing your condition. Hope it continues! X

      • There are so many places to hit “reply” – I hope this ends up in the right place. Haha!

        Thank you, Ms. (Mrs.?) Chapman. I hope diet continues to work too 🙂

        There are so many problems with how we address autoimmune disorders (especially with women). There are problems with doctors taking us seriously, problems screening for common autoimmune disorders, problems using newer ranges to detect people that would otherwise be overlooked – and when you finally do find out what is wrong, you have to deal with the stigma of being sick and with people who don’t understand why you have to have a certain lifestyle to support your chronic illness. Maybe some of these people would be more compassionate if they understood what is going on with us. I think they are just uninformed because we tend to not talk about these things, and what little they do hear is not really enough to help them understand. That is part of the reason that article is so infuriating – for some people, that may be one of the only times they hear about autoimmune disorders. It will color every experience they have with someone who has one, maybe for the rest of their lives. We can’t afford it.

        Ghe problems are compounded if you have anything else in addition to your autoimmunity. I think my anxiety and depression delayed treatment – several doctors dismissed me, sent me to therapists (their favorite solution), and tried to put me on medications. I also had a very difficult childhood. Once they know that, they use it to explain EVERYTHING. My depression actually turned out to be a symptom – it is basically gone after folate supplementation and diet changes ^-^ it does seep in during flares, but I know it will pass so it takes the pressure off.

        I’m sorry you weren’t able to get more relief with a diet change. I am still learning some of my triggers. I just started doing this about a year ago, and I wasn’t put on an actual elimination diet until February. Not to mention the gum I thought was fine and was chewing the whole time turned out to have barley malt in it. Gluten is in everything! So I have only truly been avoiding grains (except rice) for 2 months (and I have had a few really good days!). I tried to reintroduce some gluten-free crackers this past weekend and I had a flare that lasted about 5 days. Maybe it will be like dairy and I can eat them in a few years when my body has healed more. Maybe not. I can eat ice cream again though (I used to react very badly to both refined sugar and milk, even in small amounts) so that part is good 🙂

        For me, ginger tea is indispensible – it is especially helpful with my stomach and joint pain. And it is delicious!

        There are definitely people out there that claim to know the magic treatment. From what I have read and heard from other people, everyone’s autoimmunity is a little different. We should all share our experiences, but be mindful and kind. Ultimately, we are acutely aware of what happens in our bodies. We know ourselves best.

        I hope there is some breakthrough soon. It sounds like it is a combination of things, but we still don’t know so much about why this happens.

        Thanks again for this post – the internet gets a bad rep, but it has been very helpful for my experiences with autoimmunity. It is an excellent coping tool. People can congregate to trade stories and give each other emotional support. It is very healing to feel understood, and to be reminded that this is a part of my life but it doesn’t define who I am. I hope my post can do the same for other people.

        Best of luck

  2. *update*

    i am posting this update here in case there is even the slightest chance someone will read it and benefit from knowing what has worked for me.

    the last time i commented, i was still figuring out what my remaining trigger foods have in common. it’s corn!

    corn is in EVERYTHING; even in the unlikely event that it is labelled, corn “allergen” only refers to the protein (i react to corn starch, as well as highly processed derivatives where *allegedly* no corn remains).

    some things i continued to eat, after i “removed” corn from my diet:
    – unsalted butter (lactic acid)
    – cheese (still learning about this one – i am ok with some)
    – jam and preserves (citric acid, maybe pectin)
    – fruit strips (citric acid)
    – chips (lactic acid, vinegar, many other things)
    – gluten-free foods with “natural flavors”
    – chocolate (had to call company to confirm, as it was not labelled – the vanilla is sprayed on maltodextrin made from corn)
    – extracts (corn alcohol; flavorganics switched to cane sugar alcohol after customer complaints about corn so yay!)
    – gluten-free pickles (corn vinegar)
    – meat bars (lactic acid)
    – calcium supplement (calcium citrate)
    – methylated folate (i think it was in the binders)
    – gluten-free ice cream (xanthan gum, extracts)
    – gluten-free chocolate brownies (corn starch, xanthan gum, vanilla extract)
    – soy sauce (corn vinegar; may explain why my reaction to soy has been so inconsistent)
    – pasta sauce
    – baking powder (corn starch; easy to miss on an ingredients list)
    – iodized salt (i actually don’t eat this, but i wanted to mention it)

    you get the idea…

    it’s easy to say “just eat whole foods”, but it is difficult to always be prepared on such a restrictive diet. sometimes i get stuck in a bind and need that meat bar or can of sardines to hold me over.

    as soon as i figured this out, my migraines (which i have dealt with every day for the last year and a half) went away, almost overnight. they come back as soon as i mess up (it is VERY hard to navigate this allergy). it’s a very predictable reaction that begins within 4-6 hours of eating the offending food. it is an autoimmune reaction – my thyroid is visibly swollen, and it feels a lot like i am getting the flu.

    i basically stopped having thyroid flares when i cut out my last (fingers crossed!) trigger food. not to mention my stomach pain is much better. only time will tell if my antibodies have come down. at the very least, i FEEL much better.

    i have a lot of work left to do, but this has been a major push forward for me 🙂

    i hope this helps someone somewhere! don’t ever let anyone tell you that your problems are all in your head, or that you “just hate yourself deep down”. i have had this said to me so many times, even by well-meaning family members. it isn’t your fault. it isn’t because you aren’t trying hard enough. it could be diet, vitamin deficiencies, parasites, environment, genetics – or even all or none of these things. i don’t understand why people are so quick to dismiss people with chronic illnesses as “unwilling” to change, instead of accepting that sometimes we get sick and have no idea why (and more importantly, how to heal). if you need medicine to feel better, take it. if lifestyle changes help, stick to them. do anything you have to do. but don’t ever think for a second that it is your fault you are sick. it isn’t.

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