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

things i have learned from having a chronic disease like hs

“It isn’t the things that happen to us in our lives that cause us to suffer, it’s how we relate to the things that happen to us that causes us to suffer.” ― Pema Chödrön

That’s a picture of me, circa 1993 (and, in case you’re wondering – that’s well before JK Rowling penned Harry Potter. What can I say? – I was ahead of my time!)

That’s also about the time when I started developing my ‘skin issues’. Extremely painful, blister-like lumps in my groin. They would get progressively worse over the years that followed and, despite seeing numerous doctors and specialists, I never received a diagnosis. Later, they would come up on my head, as well. Visiting the hairdresser was a big deal for me.

I was frequently told that I was unclean by doctors. Consequently, I felt dirty and ashamed (all while being in a lot of pain). I also never talked about my problem. It was my dirty little secret. I didn’t even share details of my ‘skin issues’ with my Mum. Potential romantic relationships were fraught with anxiety.

Hidradenitis Suppurativa (HS)/Acne Inversa:

A chronic ‘orphan’ auto-inflammatory skin disease.

Skin lesions develop as a result of inflammation and infection of sweat glands. This condition features pea- to marble-sized lumps under the skin that can be painful and tend to enlarge and then drain. They usually occur where skin rubs together, such as in the armpits, groin and buttocks. It causes long-term skin inflammation and can be extremely painful.

Fast forward 20 years and I self-diagnosed my Hidradenitis Suppurativa (HS) after reading a guest-post by Tara Grant in Mark’s Daily Apple. I remember tearfully going over Tara’s article again and again to make sure I wasn’t imagining things – until that time, I didn’t know that my ‘skin issues’ had a name. I didn’t know that other people suffered from the same horrific symptoms. It was a deeply emotional experience.

Tara Grant changed my life.

I imagine that sounds melodramatic to anyone who hasn’t experienced the nature of chronic disease, and specifically HS – but, it’s true. I owe a debt of gratitude to a woman who lives half a world away, that I find difficult to express.

Because of Tara Grant and her leading-edge book – The Hidden Plague, I not only had a name for my illness – I had a template for improving my symptoms.

So, I set about to do just that. That led me to the Autoimmune Protocol.

And along the way, I learned a few things…

Changing your diet and lifestyle can make a profound difference

I had pretty bad acne as a teenager (there is a correlation between acne and HS). I remember seeing a specialist about it and he asked me what I did to mitigate my symptoms. When I explained that I was careful to drink a lot of water, he scoffed that this had little to do with my skin. He then prescribed me Minomycin (minocycline); and, when that stopped working – the grand-daddy of acne meds – Roaccutane (accutane). He never suggested changing my diet. He never asked me about the quality of my sleep or my levels of stress.

I am convinced that these medications contributed to the onset of my HS.

It was only when I started actively playing with my diet and lifestyle choices (and tracking the results) that I realised – quite quickly – that my choices had a big impact on my HS symptoms. And, when I say big, I mean H U G E .

Become your own advocate (or find someone to do it for you)

  1. Nobody cares as much about your health as you do
  2. Doctors don’t know everything (but do find yourself a good doctor. You deserve it)

By the time I stumbled across Tara Grant’s life-changing book, I had given up on the medical profession being able to help me with my ‘skin issues’. Remember, I had been experiencing these hideous symptoms for over twenty years. 

Armed with this new-found information, I started to take a far more proactive stand when it came to my health. My GP, who was satisfactory but not great, was the first to go. I did some digging and found a wonderful functionally-oriented GP who has proven to be a much better fit for me. Doctors are like any professional – there are good ones and average ones (and even bad ones).

Rather than taking every piece of medical advice as a given, I now question everything. I want to know the benefits and the risks. I want to know if this really is the best option for me – not just the most expedient for the doctor. I research. I seek second (and third) opinions.

After all – it’s my body. I get to decide what happens to it.

You are a unique little snowflake

Even if you suffer from HS, you may have different triggers to me. And, this is true for any chronic disease.

Your genetics, your environment and your personal dietary and lifestyle choices all contribute to making you into the person you are today. And, these will be different for you than they are for me.

While we now know that once the switch has been flipped for you, in the onset of any given autoimmune-style disease, it’s on for good – we also know that there are actions you can take to mitigate your symptoms. You may not be able to influence your genetics and many aspects of your environment (to a point), but you can definitely make better choices about diet and lifestyle.

Finding out what choices serve you is well worth the effort.

Be the tortoise, not the hare

Embarking on any diet and lifestyle change takes commitment. Whatever your flavour of healing protocol, it can be daunting at first – not least because of the recurring voice in your head that tells you that it probably won’t work, anyway… All that effort.

That well-known metaphor – How do you eat an elephant?  One bite at a time – is a handy one to apply here. Spend some time breaking your protocol down into small, manageable chunks. Ones that work for you. Start with the easy stuff and keep chipping away. If you do this, I guarantee in six months you’ll be amazed at how far you’ve come.

This AIP healing caper that I chose takes time to master. It’s not for those looking for a quick fix. Frankly, it’s never over, either. Health is a lifelong project.

Sharing helps

For over two decades, I never spoke to anyone about my HS. I was terribly ashamed and frankly, this wasn’t helped by medical practitioners being unhelpful and dismissive.

HS can be a terribly isolating disease (which is one of the primary reasons I retrained as a health coach).

Through Tara, I found The HS Diet Connection – a Facebook group of some 4,500 people around the globe who know exactly what it feels like to have HS. It’s a closed group. A safe and positive environment to share personal stories and experiences. It proved to be a wonderfully healing space for me. It also showed me that I was not alone.

If you are reading this and you even think you may suffer from HS, please know that you are not alone. Head over to the group to find others who understand.

When you have a disease like HS, sharing takes courage. Vulnerability is not a quality that comes easily to most of us. It helps me to imagine how I would react if the shoe was on the other foot; if someone I cared about shared with me about their affliction. How would I react?

Compassion (including for yourself)

HS is a gruesome affliction. It’s painful and unsightly.

I was one of the lucky ones who never developed problems under my arms. Rather, mine was isolated to my groin and head. This means it was never really visible to others (with the exception of my partner and my hairdresser. Lucky them). But, because I suffered in silence for so long, it makes me wonder still – just what other people around me might be experiencing; what their story might be.

“It is absolutely terrifying the kind of deep suffering the happiest looking people are able to hide in themselves” – Nikita Gill

Nikita’s quote resonates so strongly for me.

I remember talking to a girlfriend, who knows me very well, about my insecurities and feelings of self-doubt – this was after I came out about my HS. She was astonished. Of all her friends, I was the one who appeared the most in control; the most calm and grounded.

It seems I was able to hide, even from myself.

HS has taught me that each of us is dealing with ‘stuff’. And, it has taught me to be gentler with myself, too. This has perhaps been one of my most challenging lessons – HS sufferers are notoriously hard on themselves. I’m still working on this!


Anyone who has found relief from chronic disease understands gratitude. But, choosing gratitude is actually a scientifically proven way to improve your mental health. What we think matters.

HS was instrumental in teaching me how to be grateful. I was grateful that my symptoms weren’t visible. I continue to be grateful that I have a wonderful support network (even when they didn’t know about my illness). I am very grateful that I have had the resources to pursue a significant change in diet, lifestyle and even, career.

The thing about gratitude is that it’s contagious. The more you actively practice it, the more you experience. It’s a pretty cool trick like that.

Following an AIP way of life has been transformative for me. But it’s not always easy. If you’d like some support and encouragement as you navigate your AIP way of life, why not come and join us in the next AIP Reset?

AIP Reset

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Comments (6)

HS is awful, I have had it always and last year I found out by googleing that it is a disease… I am not alone 🙂 and I am now 51… I know that the only medication that works, kind of kills that bacteria, is Tea tree oil!!! Use it twice a day for many many weeks, and eat healthy, no sugar, no wheat, no junk…
Regards, Christina from the very north of Sweden

Hello Christina from the very far north of Sweden!

Thanks you for taking the time to leave a comment! – I use tea tree oil, too. Along with the ‘clean eating’ (especially – for me – gluten and too much sugar), I find that managing stress is also important.

Regards back from the bottom of the world! X

Excellent post! I shared it.

When you use tea tree oil are you using it topically or internally?

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