The Shame of Hidradenitis Suppurativa

The Shame of Hidradenitis Suppurativa

It is only by talking about the shame of  Hidradenitis Suppurativa that we can begin to banish it…

I’m about half way through Brené Brown’s “I Thought it Was Just Me – Women Reclaiming Power and Courage in a Culture of Shame”. It’s a compelling read. A REALLY compelling read.

It is teaching me a lot. And it’s making me think…

For the longest time I never talked about the fact that I suffer from Hidradenitis Suppurativa (HS). I just told people I had ‘skin problems’. And, I’d hazard a guess that unless you, or someone you love, suffers from the disease, you’ve probably never heard of it.

HS is a chronic and painful skin condition that features pea-sized to marble-sized lumps under the skin. These deep-seated lumps typically develop where skin rubs together. Places like the armpits, groin, between the buttocks and under the breasts. In many cases, tunnels connecting the lumps will form under the skin, too. Sometimes these lumps can last months or even years.

And most doctors don’t know what HS is. So, in many cases it remains undiagnosed.

For years. Decades, even.

HS is the primary reason I started this autoimmune protocol (AIP) caper. It has turned out to be one of my better life decisions.

But here’s the thing. Despite the fact that AIP has worked, what feels like a miracle, on my HS symptoms; I am learning that my some 20-plus years of this hideous disease really did a number on my self-esteem.

More than I ever acknowledged to myself.

Because having HS made me feel ashamed.

Shame: the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.

HS makes you feel dirty. It makes you feel embarrassed. And, most of all, it makes you feel ashamed.

Brené Brown nails it when she explains one of the reasons shame is so powerful is that it has the ability to make you feel very alone. Like you are the only one, or somehow you’re different from everyone else.

Not such a big leap when even doctors can’t tell you what your weird and painful lumps are…

In fact, I had more than one doctor suggest to me that I was unclean. True story. Anybody who knows me, knows just how ridiculous that suggestion is, but you can imagine the impact of a doctor saying this to a young woman with unsightly and painful lumps in awkward places.

I know now, that other HS sufferers have experienced similar suggestions when talking with medical professionals who had no idea what they were dealing with.

The Shame of Hidradenitis Suppurativa

And, if even doctors can’t identify your very personal problem (or fix it), why would you talk to anyone else about your symptoms?

Is it any wonder that HS makes you feel ashamed?

But if shame is about the fear of disconnection, then sharing common experiences with others who understand can be an unbelievably profound and inclusive experience.

When we hear stories that mirror our own stories, it helps us to know we aren’t alone.

But, there is a risk in this…

The Shame of Hidradenitis Suppurativa

When you live with HS, you live in fear of being seen.

It takes a lot of courage to come out and tell your story to others.

For me, the turning point came when I stumbled across a book called ‘The Hidden Plague’ by fellow HS-sufferer Tara Chester Grant. She was the one who gave me a name for my twenty-plus years of undiagnosed painful lumps. I owe Tara a huge debt of thanks.

Tara’s book, coupled with Sarah Ballantyne’s, The Paleo Approach’ showed me an alternative route to mitigating my HS symptoms.  Not only did that approach work for me, but along the way, I’ve found a whole tribe of HS peeps. And, an even bigger group of autoimmune sufferers who are following the autoimmune protocol to improve their AI symptoms.

I don’t claim to have all the answers, but I know a lot more about it than I used to. And, I’d even go so far as to say I know a lot more about HS than many doctors.

It’s that self-esteem bit that remains a constant work-in-progress. It’s hard to change the habits of over 20 years…

If you think you (or someone you love) may be suffering from HS, a closed Facebook support group I recommend is: The HS Diet Connection

And, if you haven’t yet come across the ridiculously compelling and charismatic Brené Brown, I urge you to check out her website. You can access both her TED talks there, too.. Brené Brown’s Website!

Brene Brown
I’d like to invite Brene to a dinner party. I wonder how she’d get on with Noel Fielding? – He’s on my ‘dinner party guest list’, too!
(Image from here)

 

 

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Comments (25)

I had a doctor tell me I wasn’t clean enough either when I went to them for HS. :/ I haven’t asked a doctor about it since. It’s amazing how ignorant they can be sometimes.
Thankfully, like you, the AIP has helped tremendously. I’m so glad you were able to find your triggers and punch HS into remission. But it still leaves scars – physical and mental.

SoA – me too! SO glad! I am thankful every day for finding Tara G and Sarah B…

I’m hopeful that the medical profession is starting to become more aware of HS, but it takes time. And, I think the emotional ‘stuff’ hangs around for a lot longer…

Reblogged this on The Holistic Practitioner and commented:
This hit me right in the heart! I had to stop reading for a moment just to integrate the idea of feeling shame with illness. Instantly I knew it was true. Thank you for bringing attention to this!

HP – thanks for the lovely comment (and the reblog!) Felt a bit like I was baring myself to the world BUT if it resonates with just one HS sufferer, then it’s definitely worth it.

I love Brene Brown and I love you! What a vulnerable, honest and powerful post, that’s destined to help a lot of people. Hugs to you, TSL!

Awww Eileen – you always leave the loveliest of comments. Would you like to come to my dinner party, too…? 🙂

Yes please! I know I can count on good food and lots of laughter. Now, I just need to make the trip!

Shame is so debilitating. Thank you for bringing this to our attention. It has made me think about the vicious cycle of shame about autoimmune symptoms creating stress which then exacerbates autoimmune symptoms. So toxic! It is really powerful that you are sharing this process of reversing autoimmune & untangling shame so others can do the same~.

Petra – I think I’m about to confirm that stress may be my biggest trigger… BOLLOCKS!

A lovely insightful post – congrats on using diet rather than conventional medical advice to help yourself……

N = 1, FW! It’s (I’m?) a work in progress… 🙂

What a powerful and honest post that takes vulnerability to a whole new level of empowerment. It reaches me on so many levels as an AI sufferer and how the Autoimmune Protocol has unlocked parts of my life and I thank you for your wisdom and courage in sharing your story!

It’s a funny old odyssey – I’ve a particular dislike of the word ‘journey in this context! 🙂 – this AIP caper we’re on, Emma. And yes, it is definitely a process of self discovery. One of the best parts has been meeting peeps from around the world who identify. (That’d be you, Possum!)

What a powerful post TSL. I can certainly resonate with this one. Kudos to you friend 🙂

Blogging has been an extremely cathartic experience for me, helping me to open up about my health and teaching me there is no shame in this.

PS – You deserve to have the up-most self-esteem. You are one of the most outgoing, kind, funny, generous people I know. #justsayin

It’s a mutual thing, PI 🙂

Sometimes the most important lessons are the hardest to learn, PI.

how long on AIP before your HS began healing? I have been doing this for over 2 months and while I noticed many other improvements in my health my HS is actually getting much worse. Thank you for your response.

Hi Mindy – unfortunately, I can’t give you a straight-forward answer. I went what I would call ‘Primal’ before I went the whole hog with AIP. I noticed significant improvement over a few months eating ‘Primal’, but there was an initial period of ‘detoxing’. I was very keen to launch AIP but discovered a pretty severe parasite infection and I needed to fix that before I did anything else. I am convinced gut health has a lot to do with my HS. But, stress is a massive trigger for me, too.

Very happy to talk more with you if you’d like (just drop me a line through the contact form)

What a beautiful post Joanna. After hearing your story in person back in October last year I’m so pleased you have shared it on your blog. I’m sure you too will be helping so many others in the same way Tara helped you. You are such a kind, funny, compassionate and all round amazing woman who deserves to have the self-esteem to match! xxx

Took a deep breath before hitting ‘publish’ on that one, S!

Thanks for saying all those lovely things. Made me feel all warm and fuzzy inside, Possum X

I have read this 5 times now and it is such a beautiful painful, thought provoking read. I take another morsel with each read , shame, courage, fear, acceptance., love and a journey to becoming enough…#brave …

Sharon – it’s comments like yours that make writing something like this post worthwhile. Thank you.

I have a rare and chronic condition that causes painful lumps under my skin also. Like you, I’ve always just told people I have “skin problems”. I’ve been thinking of writing my own blog about my journey, but didn’t realize my own resistance until I read your article. Thank you for sharing your story, it brought me to tears. I hope one day I can share mine as bravely.

Hello lovely Christine – thank you so much for your comment. Made my day.

When I started blogging, I had no idea where it would lead. Or, how many wonderful new friends I would make. It’s been a great experience.

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