Walking With Hidradenitis Suppurativa (Part 1)

By Chaz Frazier

Last Updated:

1 min read

Here is the first video of my Walking with HS series. In the first installment, I pose and answer the questions of how long I’ve been walking with HS, while also touching on some of the toughest aspects of the disease.

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CommunityMember631 Member

Hi there . I have been walking with HS for 29 years. Diagnosed around a decade ago. The toughest part is the pain for starters . The fatigue and illness is next and last but not least would be the scars. I feel like a leper from biblical times. I take it all back ; the toughest part is the lack of understanding and support for me. 
1. Chelsea Freund Member
 
 <inline-mention username="CommunityMember631" user-id="4822641"/> Hello! I think we get it. In real life, I don't know a single person who has HS, and it's the pits. I think only about 5 people actually know I have it, and they vaguely know what it is. It's terrible that you had to wait nearly 20 years for a diagnosis. I think doctors are finally getting smarter because of all of the research and publications that are being done because of the biologics. How do you feel about the treatment you are currently receiving? Does anyone know about what you are going through to get treated? Sending you lots of hugs! ~Chelsea (Team Member)
Scribbles Member

I have been walking with HS for 26 years now but just recently diagnosed. Someday it is a blessing to know and other days I wish it was all still a mystery. The toughest part for me has been the fatigue, the pain, and the fear of insurance companies. Many days the only thing I accomplish is getting out of bed and moving to the recliner or couch only to return to bed within 2 hours. I miss my time with family and friends. I miss hiking and bird watching. I look like I am 80 when I have active flares in my groing when I walk. I tend to stay home more now days
1. Chelsea Freund Member
 
 <inline-mention username="Scribbles" user-id="4507214"/> Hi Scribbles! As you can see, you are not alone! Walking puts us out in nature with our favorite things, but holy moly, do we ever pay a price! I'm so sorry that it takes such a toll on you. Do you try to keep a little nature nearby, in the form of bird feeders, or indoor plants? I hope you know that you aren't alone when it comes to fear and anxiety as well. Of course constantly being in pain changes our brains. We can handle a certain constant level of pain, but NEW pain messes us up, so if we have a sudden flair it's difficult to cope - and that happens all the time. And the specific fear of insurance companies tends to be truly American. They outright deny coverage, or stop coverage suddenly, or the costs are astronomical. Do you have anyone you can talk to that is in the counseling world? I have used the services of a local university where the grad students counsel members of the public who sign up for services for free so they can get their final hours in for graduation. They are constantly monitored by professors (doctors/therapists) and do a great job, and are not at all burned out, which I find to be really helpful. Sending you lots of hugs, please know that you are valued and valuable! ~Chelsea (Team Member)
Joey Torre Member

<inline-mention username="Chaz Frazier" user-id="2400209"/> ive been living with HS for over 14 years and, to say the least, it hasn't been a walk in the park. Much like yourself, walking is one of my favorite forms of exercise. However, HS can prevent me from walking some days because the pain from