7 Things I Say to People Who Have Just Been Diagnosed with Hidradenitis Suppurativa

7 Things I Say to People Who Have Just Been Diagnosed with Hidradenitis Suppurativa

I’ve worked with many people with Hidradenitis (also called HS, acne inversa and Verneuil’s disease). It’s really frustrating to me that so many people are never diagnosed to begin with, but it’s even more frustrating that they hear such misinformation when they are diagnosed.

For most people who finally get diagnosed with HS, it’s very common to hear:

  • “It’s because you’re overweight.”
  • “You should be better about personal hygiene.”
  • “You’ll need to be on antibiotics for the rest of your life.”
  • “You’ll need surgery.”
  • “You just have to learn to live with it.”

What is Hidradenitis Suppurativa?
In case you’re not sure, Hidradenitis Suppurativa is an awful condition.  It means you get painful, sometimes oozing, bumps in specific, very personal areas of the body. The lesions tend to start after puberty (as if being a teen isn’t already hard enough – now you get to deal with this, too).

These abscesses occur where skin rubs together like the armpits, groin, genitals, buttocks, and under breast tissue. They can become infected & smell. They can tunnel under the skin to form “sinus tracts.” They leave scars.

How Serious is It?
Cases can be mild or severe, but if you’ve got it, you know how painful the puss-filled boils can be. It’s painful enough that you often can’t do simple things like get dressed, sit down, sleep. Plus, it’s embarrassing. You don’t want anyone to know – or SEE – that you have these ugly, red, oozing things. HS makes dating and relationships difficult to impossible.

You know how bad it can get? The Social Security Administration recognizes HS as a permanent disability. And many people commit suicide because of this condition. It can get that bad.

There is Hope
Given these risks for people with HS, it’s incredibly important to me that people know that there is hope, and that there are alternatives to what most doctors will tell you.

How do I know? I have HS. It started in my teen years. I just thought I had some serious acne in weird places. I didn’t mention it to anyone because I was mortified. It got worse in my 20’s, and I figured out on my own that it is HS when I was in school. Since then, I’ve changed my diet and found a key supplement that helps a ton. I rarely ever have outbreaks now, and if I do, they are mild & heal quickly.

Here are the most important things I say to anybody newly diagnosed with HS:

1.     It’s not your fault.

You’re not being punished, and you aren’t a bad or dirty person.  HS is simply telling you that your body isn’t healthy and needs some attention. It’s like a warning light going off in your car. Being overweight can make the condition worse, but weight didn’t cause it. Being overweight is just a sign, like HS, that you aren’t as healthy as you could be. HS isn’t a hygiene problem, either.

2.     You’re not alone.

Hidradenitis is considered to be rare, but it actually isn’t. According to the Hidradenitis Suppurativa Institute, newer estimates are that 1-4 in a hundred people have it. You know a hundred people? Then you know some others who suffer with this.  Sadly though, it’s not a glamorous condition, so most people suffer in silence, thinking that nobody else in the world has this same problem.

3.     Hidradenitis is NOT caused by a bacterial infection.

Sure, the boils can become infected once they form, but that’s a different issue. While taking antibiotics can help once the sores become infected, antibiotics do not alter the long-term course of the disease. In fact, long-term antibiotics can make your health worse. New studies are showing that antibiotics lead to the destruction of healthy flora in your intestines and can create Intestinal Permeability (also called Leaky Gut)(1). Recent research from Dr. Alessio Fasano (2) implicates Intestinal Permeability in the rise of autoimmune diseases, like Hidradenitis.

Bottom line: those antibiotics can make the condition that led to you getting this awful disease even worse!

4.     Surgery is not a good option.

Avoid it at all costs. The root cause of Hidradenitis isn’t IN your skin, it just manifests in the skin. You can surgically remove the skin in the area you get the boils, but that doesn’t remove the REASON you are getting boils in the first place. Most people who have surgery experience boils returning to the same area, or boils showing up in new areas, or they develop other autoimmune conditions – because surgery doesn’t fix what’s causing the boils.

5.     You don’t have to suffer with boils forever.

If you are working with a conventionally trained doctor, you have probably heard you just have to learn to live with it.  This is only true if you just stick with antibiotics. Lifestyle changes and functional medicine can give you some incredible improvements in symptoms. Some people see a complete reversal of Hidradenitis.

Functional Medicine is a different approach from the conventional system. This approach relies on finding the root cause of a health problem, and then using lifestyle changes, diet, and supplements to heal the root cause. The result is a healthier body, not a medicated body. Two things you can start right away on your own are adopting a gluten-free diet and taking a zinc supplement (3).

6.     Most people with Hidradenitis have a food trigger.

Autoimmune conditions like HS very commonly involve one or more food sensitivities. Everyone these days has heard of gluten, but there are other culprits. Everyone is individual, so it is worth some investigating to see what triggers your boils. For you, it could be potatoes, and for someone else it could be oats. If you knew a particular food was like poison to you and resulted in painful boils, wouldn’t you want to find out and stop eating that food as fast as you could? Or, instead of eating well, you could just get surgery. (That’s me being sarcastic.)

7.     Work with a Functional Medicine practitioner.

If you want less pain, fewer outbreaks, better health, and to maybe even reverse your condition, the best option is to work with a Functional Medicine practitioner. Whether their original training was as an MD, PA, nurse practitioner, chiropractor, naturopath, acupuncturist, nutritionist or health coach, these people who have gone out of their way to be trained in Functional Medicine have a different set of tools and a different outlook. They can help you with finding the root causes of your Hidradenitis and then correcting them.

There is hope for you. I know this because I’ve been in your shoes. If you can’t find a Functional Medicine practitioner in your area, I offer online video consultations from anywhere in the US. There’s no reason to suffer any longer.


Photo: Steve McClanahan



1  Tulstrup MV-L, Christensen EG, Carvalho V, et al. Antibiotic Treatment Affects Intestinal Permeability and Gut Microbial Composition in Wistar Rats Dependent on Antibiotic Class. Loh G, ed. PLoS ONE. 2015;10(12):e0144854.

2  Fasano A. Zonulin, regulation of tight junctions, and autoimmune diseases. Annals of the New York Academy of Sciences. 2012;1258(1):25-33.

3  Brocard, A, Knol AC, et al. Hidradenitis suppurativa and zinc: a new therapeutic approach. A pilot study. Dermatology. 2007;214(4):325-7.