Video-Cast: Hidradenitis Suppurativa – My Story

Hidradenitis Suppurative and Me

Last week was HS Awareness Week. HS is short for Hidradenitis suppurativa. It also happens to be my flavour of chronic skin disease.

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ― Kahlil Gibran

I suffered from undiagnosed Hidradenitis suppurativa (HS) for over 20 years. In this Facebook Live, I get a teeny bit windswept and interesting (read: emotional) as I share what it’s like to live with an undiagnosed, painful and embarrassing skin disease for over two decades. Spoiler alert – it really sucked!

Along with my story, I share a little about what we know about HS, a couple of books that have really helped me, and just why I believe the Autoimmune Protocol is the health framework was the right one for me.

As I hit ‘publish’ on this post, the video has been viewed 2,044 times on Facebook. That blows my little mind!

The video is longer than usual (almost 30 minutes) – it’s a very personal subject for me. If you suspect you suffer from HS (or you know someone who may be affected), please share this post. It’s so important that HS sufferers know that they are not dealing with this alone.

Other HS-related posts and resources:

AIP Reset

 

If you are one of the many people using the Autoimmune Protocol to help heal your HS, why not come and join the an AIP Reset – your 30-day program to (re)find your AIP groove?

30-days of back-to-basics AIP in a supported and supportive environment surrounded by other people who get it.

To learn more or to join us, click here.


Things chronic disease has taught me

It’s not all bad! Having a chronic illness (like HS) can teach us GREAT things, too…

GREAT Things I Have Learned from Having a Chronic Disease Like HS

 

 

 


The Shame of HS

HS made me feel dirty and that made me feel ashamed.

The Shame of Hidradenitis Suppurativa was when I first really started recognising what a number HS had done on me. Thanks, Brené Brown!

 

 


The two books that I reference in the video:

The wonderfully inclusive dedicated HS Facebook support group that helped me stay sane when I first had a name for my skin issues and started using diet and lifestyle to improve my horrific symptoms:

 

HS is a hideous disease. I know. I suffered in silence for over 20 years.

If you are interested in learning more about how to apply the diet and lifestyle changes outlined in the Autoimmune Protocol to help your HS symptoms, I would love to talk with you about how I can provide coaching support.

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Comments (4)

[My AI disease, though not HS, is also rare, incurable, as well as steroid-dependent to sustain daily life.
In my experience, the AIP lifestyle makes autoimmune-related disease less invasive by reducing inflammation, pain, and definitely helps the body reduce the horrible side effects of the meds.]

Joanna, your vulnerability is refreshing along with your desire to make others lives better – inspiring!
Your contributions to the AIP ‘society’ – immeasurable!
‘Meeting’ you via the AIP in 6 program, a couple years back, was pure joy.
Your coaching is foundational, extremely beneficial, as well as delightful. Did I mention you are a blast?!

Joanna, you were created for this – to help others in this area of nutritional/lifestyle healing, your sense of humor, your heart – you have found your purpose! 🙂

Marla – thanks so much for you wonderful words. You made my heart full.

[…] an internal reaction. We start allowing ourselves to be vulnerable (as evidenced in when I shared my Hidradenitis suppurativa story); we start actually believing that we are enough – right now, in this moment. And, if we work […]

[…] find wrong with myself. We won’t even get started on the hideous secret I was hiding with my Hidradenitis suppurativa ‘skin […]

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