My Life With Hidradenitis Supprativa

Hidradenitis Supprativa

One night my mom was looking at a show called Mystery Diagnosis.  One of the stories was of this guy who was experiencing the same symptoms I was.

You see up until that point I was suffering in silence with an unknown and rare condition.   

My mom called me that night and said, “I think I know what you have – it’s called Hidradenitis Supprativa.”

What Is Hidradenitis Supprativa (HS)?

Hidradensitisis Supprativa (I dare you to that three times fast) is a long name with a lot of pain associated with it.  Most people don’t know how to pronounce it and definitely don’t know it exists.  

It is an autoimmune disease that affects the skin, specifically the hair follicles of the skin.  One or a few hair follicles can become inflamed which causes an infection of those follicles. The result is intense swelling unbearable pain.  I, along with several other people in the HS community call these flares.

Doesn’t sound like it would be that bad.  

But, boy oh boy, if you only knew how painful this disease actually is. There would be days when I couldn’t walk because of a flare on my thigh or other times when I would be sitting at my desk at work in tears because it hurt to move my arm.

There were times when all I wanted to do was curl up into a ball and cry. 

I’ve gotten used to the physical pain that HS causes but the emotional pain is something I’m still working on.

My Journey With HS

I can remember times in the past when I had mild flares.  They never used to bother me because they weren’t that bad and would always go away quickly.

However, lately, the flares have gotten worse and have become more frequent. 

A few years back, I went into what I think was remission or at least a regression of my disease.  This is when I had lost a significant amount of weight – around 50lbs.

I’ve since gained weight again and the disease has been out of control.

When I look back over the last 3 years, I have been in chronic pain for much of it.  It’s debilitating at times. However, when you deal with chronic pain you kind of get used to it.  Which is why no one knows just how bad you are suffering.

How I Plan To Kick HS In The Ass

Seek Out Specialists

Not much is known about this disease because, well…it’s embarrassing.  Because it’s embarrassing, not many people have come forward. However, there are a few brave souls like Jackson Gillies who are stepping up to the plate to use their platforms to gain more awareness for HS.

I’m lucky – I live in a state with one of the leading specialists for HS. His office is partnering with researchers from the local universities to conduct research on this disease.

Better Nutrition

It’s my firm belief that this disease or at least my instance of this disease can be controlled through diet.  So I’ve been on a journey to figure out what causes me flares.

I noticed that I was flaring when I ate certain foods.  

So far I’ve figured out that soy, dairy (not eggs), and wheat seem to be my “triggers” for flares.  Especially the wheat! I’ve been working hard to remove those foods from my diet. The only problem is, is that 90% of foods are made with those ingredients.

Almost all the foods I used to love to eat had some form of soy, dairy, or wheat in them.  Changing my diet has been difficult as I love to eat (which is probably why I’ve gained all my weight back. )

I’m making strides to create a healthier and optimal diet for my body. I’ll share some of my favorite recipes and products here on the blog.

Lose weight

I remember the doctor asking me if I had diabetes. From my research, there may be a correlation between insulin resistance and HS.  When I was at a smaller weight, I can’t remember flaring up nearly as much as I did now. 

I am embarking on a weight loss journey to lose this weight once and for all.

You are Not Alone

If you are suffering from HS, please know that you are not alone.  

There are so many more resources available now than there were just a few years ago. 

I joined an HS support group on Instagram called @hidradenitis_stories where we talk about all things HS from treatments to how to tell someone you’re dating you about your disease.  

You can also find lots of resources on Youtube.  Two of my favorite Youtube channels that discuss HS are Beautiful Brown Baby Doll and Attune Functional Medicine

This disease is horrible but it doesn’t define us.  We can beat this!

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