Life with HS
I walked past this paper and pen so many times before I actually got over the fear of sharing my story living with Hidradenitis Suppurativa. For years I've been a supportive person for so many people who I've never met in person and have devoted my life to being an inspiration for others dealing with HS.
My name is Keevin Collier I'm 44 years old, I've struggled with HS since 2007. How do I explain what HS is to those who've never heard of it? Well for the last 14 years of my life it's kinda been the same choice of words for me. HS is a silent, painful monster that takes certain places on my body hostage at times requiring lots of home treatment before seeking medical attention, which has led to me having 30 surgeries and so many incisions to drain.
In my earlier stages of HS, it was frustrating explaining what it was after seeing so many medical professionals having to tell my story over and over again. That very frustration motivated me to speak out more about my experiences with HS to motivate others that are suffering to Stand Up for Hidradenitis Suppurativa.
I found myself going to doctor's appointments with awareness signs, and my clothes marked up with Hidradenitis Suppurativa quotes. I couldn't even sleep at night. I hung signs on street corners as I hung them up, they pulled them down. As they pulled them down, I hung them up. It was like a war going on in my mind that the doctors can save me until I realize I had the power within myself to change my way of thinking struggling with HS.
Finding a community who understands
One of the best things that happened to me was joining a group on Facebook where I got to interact with the first people who knew exactly what I was going through and I knew exactly what they were going through. It was like we were a family that got split up and reunited after twenty years.
It was always hard to talk to a doctor, they only had 10-15 minutes to see me and always had a line of people in the waiting room. I needed compassion, I needed someone to listen to me, rub my back in this brand new storm that wouldn't go away. I grew up playing sports and work for my family's construction company, so I consider myself to be in pretty good shape. I've always been a skinny guy who can never gain weight no matter what food and how much I ate. So I still seem to have the same question, how did and where did Hidradenitis Suppurativa come from and why did it enter my life destined to flip my world upside down?
Continuing to raise awareness for hidradenitis suppurativa
Many of us who suffer from the condition every day have the same question and this is why it is my duty to continue to raise awareness and ask more questions as we gain more knowledge. I am no medical professional. I just speak from the experiences that I've personally had with HS. The recommendations that I give people are things that have worked for me; everyone's body is different.
The doctors have given me so many antibiotics over the years, my body does not like them anymore so medicines are out of the question for me. I have no specialist that I can call on or go see when I have very bad flare-ups, most of the time, I'm admitted into the hospital to have surgery or a local incision is made and left open to drain.
HS doesn't have a specific area it likes to attack my body and a lot of different places with the majority of my surgeries in my buttocks and groin areas. I've had multiple surgeries in both of my ears as well which was the most painful of them all. So far I haven't found any medications that work for me, so I've tried to cut out certain things in my diet that trigger my flare-ups. I've learned over the years a healthy diet prevents my body from having as many flare-ups, as do my hobbies keep my mental health grounded.
The HS Stand Up Foundation
Lots of people who suffer from this chronic illness also suffer from lots of mental health issues. I've learned over the years that my hobby of fishing keeps me happy which also keeps my body balanced and prevents it from breaking out as much. It took a lot of work and time to figure out things that worked for me, once I got over the frustration and anger of having this illness it motivated me to start a non-profit organization raising awareness for HS.
Today I serve as the Founder-President of the HS STAND UP FOUNDATION where we're dedicated to raising awareness for HS and bringing people together who have the illness. There is no known cure for Hidradenitis Suppurativa, I believe with more research and awareness we can help so many who struggle nationwide have a better quality of life living with it.
How has your HS affected your relationships with friends and family?