If this is your first time here, it is worth starting at the beginning: the story of my Hidradenitis Suppurativa covers the diagnosis, hospital visits, antibiotics, and everything else. I wrote that article in 2019, when this journey had only just begun and I still had no idea how it would turn out. Life moved on after that, but the blog did not quite keep up. I realized I had left you halfway through the story.
Seven years later, I am back to finish it. Spoiler: I am still alive, and I am doing well too :).
Where we left off
In 2019, after years of abscesses, scars, and incomplete answers, a TEDx talk and a book by an American patient introduced me to a dietary protocol for autoimmune conditions called the AIP protocol. The basic idea, as I understood it, was to temporarily remove foods that might trigger inflammation, support the gut, give the body time to settle, and then reintroduce them one at a time to learn which foods your body tolerates and which it does not. This was my personal experiment, not medical advice. I am not a doctor, and HS has no definitive cure. I documented the full process step by step, first on the blog and later in the book.
What I never fully shared, though, was what happened next.
The hard part, which was not the diet
Everyone assumes that the hardest part of an elimination protocol is giving up pizza. Here is a secret: after a few weeks, you barely even think about pizza anymore.
The hard part is everything else. At first, my parents had very little faith in this approach. That was understandable, since it was not being proposed by a renowned specialist in a white coat, but by their son holding an American book. My mother cooked for the whole family and was not exactly thrilled about having to overhaul her kitchen to accommodate my "strange diet." Eating away from home was even harder. In a culture where food represents identity, affection, and community, turning up for dinner and saying no to bread, pasta, and dessert automatically makes you the difficult person at the table.
I often felt excluded and pushed to the sidelines. Some people helped and supported me, and I will always be grateful to them. Many others never understood the sacrifice I was making or how important it felt for me to avoid certain foods. It was not about following a trend. I was trying to find a way to feel well again. If you are going through this stage, know that the loneliness can be part of the journey. It also passes.
Then, after 6 to 8 months, silence
Not the silence of loneliness and misunderstanding, but a silence filled with peace, calm, and satisfaction. The silence of skin that has stopped screaming.
After around 6 to 8 months on the protocol, the abscesses and nodules I had began to disappear, one after another. Since then, and we are now talking about years, I have not had any significant symptoms. Not even during my most stressful or physically demanding periods. As long as I follow the way of eating that works for me, things remain calm.
Looking back, that is exactly why I disappeared from the blog. When a condition stops taking over your days, you also stop feeling that you have something urgent to say about it. In hindsight, I should have written this sooner. The silence was news too.
Seven years is a long time. Has everything really been perfect?
No. I want to tell you honestly, because this is the part I wish I could have read back then.
Every now and then, months apart, a small nodule has appeared on my scalp or under an arm. Nothing like the abscesses I used to have. These were small bumps that settled within a few days while I continued with my usual eating plan and, at most, used a little prescribed topical clindamycin.
The only noteworthy episode happened around two years ago, after six years of calm. What looked like an ingrown hair appeared on my abdomen after summer hair removal. Its shape did not even seem connected to Hidradenitis Suppurativa, but anyone living with HS knows the feeling. Every suspicious bump can briefly reactivate that old alarm. It resolved, and the alarm faded again.
Food reintroductions: reclaiming freedom one bite at a time
The part I am proudest of is not the elimination phase. It is what I have managed to reintroduce. With plenty of patience, one food at a time, and by watching for reactions as I describe in the protocol's reintroduction phase, I have welcomed dark chocolate, nuts, and peeled potatoes back into my life over the years. It may not sound like much, but for anyone who has completed a true elimination phase, every one of those foods feels like a celebration.
Then there are the occasional exceptions. During calmer periods, I have eaten gluten without experiencing any reaction. The same has happened with dairy. Please read that carefully. These were extremely isolated occasions, months apart, and they always happened when I had no active inflammation at all. This is not a free pass. It simply means that, in my own experience, my body seemed to have more flexibility once things had settled. And I am talking about MY body. You have to learn how to listen to yours, ideally with support from a qualified healthcare professional.
What I have learned over these 7 years
I have learned that remission is not a finish line you cross once at the end of a long, exhausting marathon. It is something you maintain day by day through choices that eventually stop feeling like sacrifices and simply become your way of living.
I have learned that diet is as much a social matter as it is about food. Finding people who understand, or at least respect, what you are doing can matter as much as any supplement. If you do not have those people around you, there are more than two thousand of us in the community, and you will find that understanding there.
And I have learned that the story continues. I brought the complete protocol together in the book, along with everything I personally tested and the sources I studied. If you are at the beginning of your journey, it is the starting point I wish I had, to use alongside appropriate medical care.
Seven years ago, I did not know how this story would end. Today I do. It has not ended, and that is completely fine. Keep going, warrior.
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