AIP Stories of Recovery: Bonnie’s Recovery from Hidradenitis Suppurativa

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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.

Bonnie remembers spotting her first symptoms of hidradenitis suppurativa as a teenager, but because they were inconsistent and uncomfortable to talk about, she kept things to herself and found her own ways to cope. 25 years later, after seeing the condition represented on a TV show, Bonnie finally pursued more information, discovered AIP and began a slow but steady path to boil-free skin.

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?

I have hidradenitis suppurativa (HS). I remember getting my first boil in my groin when I was about thirteen. As the years progressed, so did the boils, they moved into my armpits and other places where there is skin to skin contact. There didn’t seem to be any discernible pattern. They just came and went. Sometimes I’d have one. Sometimes I’d have many. Sometimes when you have more than one, they tunnel together under your skin … this is stage three and I have only ever had that happen once or twice. I have mostly lived with the disease in stages one and two.

My boils varied in size. My largest one only ever progressed to the size of a golf ball but I’ve literally passed out from the pain of having someone or something bump into (or from sitting on) one of those!

They don’t heal with any sort of regularity. Some stay for a long time – months. Some for a short time – weeks. Some just disappear. Some burst.

All of them have left scars that do not heal.

Describe what the lowest point on your health journey was like.

I don’t think I had a particularly dramatic ‘low point’ … my journey was constant and I was resigned to my fate …

I never went to the doctor specifically for my HS. I had an emergency room “trauma” as a three year old that left me quite frightened of doctors and hospitals for many many years. But if I had to go to the doctor for something else, they would usually catch sight of a scar or a boil and I’d ask them if they knew what it was. I was told all sorts of incorrect things. One doctor said it was acne and it would clear up when my zits went away. It didn’t. The most common mis-diagnosis was swollen lymph nodes and/or ingrown hairs. They told me I could have them surgically removed if they bothered me too much. With my love of all things medical I always said “no thanks!”

I learned how to care for the boils myself. Hot compresses, epsom salt baths, bandages, various ointments, these were my best friends.

I learned how to care for open wounds too because when something the size of a golf ball bursts, it creates a similar size hole in your skin.

I was always on the lookout to see if I could see evidence of it on anyone else!
I never did.

I always kept my ears open to see if anyone ever talked about similar symptoms.
They never did.

Years and years and years (like 25 years!) went by and then one night, I was up late by myself. There wasn’t much on TV and I was half watching a show called “World’s Most Embarrassing Bodies” and I saw it!! I knew that the person they were showing had what I had! I grabbed a pen and wrote down hidradenitis suppurativa. And then, I started googling! What I discovered what that there was no cure.

I stopped googling.

I had managed all of these years.

I decided I’d be fine.

What challenges influenced you to look for a solution? Basically, what was the tipping point?

A couple of years later, just after I turned 40, I went to have a routine check up with a new doctor. She was the first doctor to ever say to me “I think you have hidradenitis suppurativa.”

I couldn’t believe it!

After 27 years, finally, I had a proper diagnosis. She recommended that I see a specialist. I think it was a dermatology specialist and so I went on the waiting list. It took two years to get that appointment!

In the mean time, I decided to start researching for myself again. I knew there was no cure, but I wondered if there was anything ‘radical’ out there … anything that I would feel comfortable trying.

I don’t remember the time line or all the details and they would be boring anyway but I discovered that HS was an autoimmune disease (although there is still some debate about that … some refer to it as an autoinflammatory disease).

In any case, some people had found remission from HS by following the Autoimmune Protocol. I wanted to be one of them!!

When you found a protocol to help you heal, what was it and what was your first indication that it was working?

Mid April 2017, I went cold turkey and started eating and living the AIP way, and you know what happened?

Nothing … for the first few months.

But I joined some AIP and HS support groups on Facebook. I asked questions. I listened. I tweaked what I was doing. I started following AIP accounts on Facebook.

And after about three or four months, I started to see changes.

Small changes but oh my goodness … changes!!

My boils started to react differently.

They didn’t get as big.

They didn’t stick around as long.

And as the months (and now years) continued on, I continued to see more changes.

Eventually the boils stopped bursting! They all just started to disappear on their own.

And then, at some stage, I realized I hadn’t had a new one for a while! That was incredible feeling and way beyond what I ever thought possible.

I am 47 now and thanks to AIP, I am boil free for the first time in 34 years.

What resources have you used on your healing journey so far and how did you find them?

I searched my library for every AIP book/cookbook I could find. Eventually, I bought my favorite ones. I scoured the internet and found great websites … like Autoimmune Wellness and The Paleo Mom. I joined support groups on Facebook and started following Instagrammers that inspired me. I listened to podcasts.

Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?

Yes. Surgery. I rejected them because I have a (irrational but real) fear of doctors/medical procedures and avoid them if possible. I didn’t know about other methods until much later … but I was intrigued when I discovered them.

It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?

So many things! My family … my husband and two amazing teenagers. Our crazy puppy. Walking on the beach brings me joy. The sound of the waves, the cool ocean breeze, the sand between my toes. Our garden. Homegrown herbs. The birds, the flowers, the bees and ladybugs.

To learn more about Bonnie’s healing journey check out her website, or follow her on Instagram.

Would you like to share your Story of Recovery? Let us know by filling out our interest form.

About Grace Heerman

Grace Heerman is a writer and website designer based in New York City. Through her business Said with Grace, she helps coaches clarify their message and create authentic websites that actually bring in business. Here at Autoimmune Wellness, Grace writes book reviews, manages blog content, and organizes Facebook publishing. She is an avid traveler and loves spending winters in Asia. You can connect with Grace and learn more about her writing and design work on her website, Said with Grace.

1 comment

  • Donna says

    Bonnie, I just wanted to comment quickly that I understand your journey. My HS journey is quite similar. Started at age 12/13 and I did not get properly diagnosed until I was age 65. I had always handled my skin issues myself too. For along time I had thought HS was Autoimmune and recently learned HS s Auto-Inflammatory. (My youngest son, now age 47, also had HS, stage 3. He is on Humaira now.) I started the AIP Healing Lifestyle Protocol 9 years ago for Autoimmune Hashimoto’s’ and found that the protocol also improved my HS lesions as well. I am also using Functional Medicine which is perfect for my personality and desire to be as holistic as possible. Congratulations on your improvements and keep spreading the word about AIP!

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