When you’re sick and tired all the time

Hello, my name is Krystle. I’m a 33 year old woman who was diagnosed with HS 3 years ago. This is my story.

It’s difficult to explain to people how much pain you’re in when what they see looks normal. They can’t see the scarring, or know how embarrassed you’re feeling. They don’t understand the pain and exhaustion from living with the disease.

HS is a life changing disease, especially when you can’t predict when your next flare up will be. My job is strenuous; involving organization, cleaning and staging. So, because of the disease, I had to cut my work hours down to almost nothing. It’s very hard to hold down a job when you can’t be relied on.

The biggest challenge I’ve had with HS is getting a diagnosis and proper medical treatment. I diagnosed myself after I started getting sores on my breasts. I was told by my first dermatologist that what I had was only a hygiene problem;

And to take bleach baths.

I now have an amazing dermatologist. I wish everyone with HS could find a dermatologist that is as experienced with HS. Along with proper medical treatment I think it’s important for HS Patients to find a good support group. It’s amazing how much you can learn from people who have the same struggles as you do.

I’ve tried a lot of different treatments for the disease, including:

  • Accutane
  • Antibiotics
  • Diet changes (went dairy and gluten-free) for a year.
  • Hormone blockers
  • Holistic Treatment
  • Kenalog injections
  • Laser hair removal
  • Lancing’s
  • Surgical Removals
  • Weight loss

Going dairy and gluten free for a year just did one thing. It made the size of my wallet shrink. It’s expensive, and you do not have much choice in what you can actually eat.

I think HS disease affects a lot of people, but they are too embarrassed to seek help. HS not only eats away at our bodies, it can take away our self-esteem as well. Having it can also make having intimate relationships almost impossible.