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.

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…

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!