Uncovered: From Anonymous to Advocate. The Mikey D Story.

This story is a first for Uncovered and I'm excited to share this one with you all. There are some experiences with HS that cross gender, age and background: the pain, isolation, the years spent searching for answers. But there are also stories we don’t hear nearly enough of. This week for the first time in the Uncovered series, we’re hearing from a man living with Hidradenitis Suppurativa. Mickey D, my homie, my brother in HS has lived with HS for over 2 decades. His symptoms started when he was a teenager, like most of us, affecting highly visible areas like his face, scalp and neck well before it started showing up elsewhere on his body. My favorite thing about this story is the fact that he once hid his face and now look at him shining. Today he shows his face, shares his story, advocates for others, and sure warriors in this community know that if they need help finding an answer, if he doesn't have the answer, he’ll help you look for it.

From Anonymous to Advocate, The Mikey D’s story.

My name is Michael Duguay aka Mikey D. I've suffered with this condition for over 2 and half decades and it hasn't been easy. I remember as a teenager having really bad acne on my face then later it turned into boil-like abscesses on the face, scalp, and neck. I'd have to go to the emergency room to have them lanced and drained and absolutely hated that. That's really how my fear for doctors and needles began. I was in my early 20's and completely devastated by how much this condition destroyed my appearance. My self-esteem dropped and I started to isolate myself. Every time I'd go to the doctors they would brush it off and tell me they were just infected hair bumps, but I knew it was something deeper. I went undiagnosed for more than 10 years.

My HS initially started on my face, scalp, and neck and eventually moved to my underarms, groin area, and chest around my late 20's. It wasn't till my early 30's I started to really get answers. It was actually the mother of my kids who messaged me one day, to tell me that she ran across a lady on Facebook that had something that looked like what I was dealing with. I was finally able to put a name to it. I just couldn't pronounce it to save my life, lol. Shortly after that I ended up in the hospital due to a flare on my neck the size of a small orange and the doctor finally confirmed I had Hidradenitis Suppurativa. Even though he informed me that there was no cure I felt a sense of relief. Now I knew what I was dealing with I could research it more to better understand it and that led me to finding a whole HS community on Facebook. I felt seen and heard for the first time and at that moment I realized I wanted to help others get that same feeling.   HS took so much from me in my life. My confidence was out the window. For years my profile picture was the famous Anonymous mask because I was so embarrassed from my scarred-up face and scalp. I went from a low-cut caesar to Locs that would mask the bald spots on my scalp and also hang on the sides to cover my jawline and back of the neck. I didn't want to date because I felt ugly on the outside and deeply depressed on the inside. Eventually after receiving so much love and encouragement from the community I'd step out of my comfort zone and show my face and share my truth. For that I'll forever be grateful and I knew I was meant to be the man for the community.  

I searched and searched for answers on how to treat this condition because pumping myself full of antibiotics wasn't doing it for me. I eventually found a doctor that suggested a biologics treatment called Humira. At first, I was apprehensive about putting something like that in my body and definitely wasn't looking forward to the needles that came with it. I can now say that I'm thankful I did it because I was able to get some of my life back and really be the father my kids needed. HS treatments are not one size fits all type of thing. What works for one may not work for others so it's best for each person to understand their treatment options to make the best-informed decision for themselves.  The one thing I wish people would understand about HS is that this condition is extremely painful and people who suffer with it deserve some if not a lot of grace. We'd love to go do all those wonderful things in life but how we navigate life has completely changed.  I advocate for the community.  Community is and will always be my main focus. Making sure I'm able to share knowledge of this condition so the community understands what they are living with helps them better advocate for themselves. Also, I set out to make sure every warrior feels seen and heard. Let them know they are not alone in this fight. If anyone has questions or is looking for help they all know I'm just a message away and if I don't know the answer, we'll find it together.  

Last but not least I'd like to talk about something very special to my heart. A few months back 2 wonderful warriors came to me and asked if I'd be a part of a new non-profit organization that is focused on reaching the younger generation of HS warriors. The high school and college kids and from someone who went undiagnosed around that time it was an easy yes to be a part of something so special. So be on the lookout for Beyond the Skin HS because we are coming in hot.  We recognize the need to understand and provide resources at an early stage when dealing with Hidradenitis Suppurativa. Honestly looking back on my life, I could say I didn't see myself here now, but I'm blessed that I am. 

                                                                                                                 Mikey D

His story leaves me thinking about the teenage boy at the start of it all. The one watching his appearance change without understanding why, the one being told he had infected hair bumps when he knew something deeper was happening. He couldn’t have known then that one day he would use that same face, that same voice and those same experiences to make other people living with HS feel seen. Thank you, Mikey, for trusting Uncovered to tell your story. You gave us an important perspective we haven’t shared here before. Men live with HS, too, and their experiences with body image, dating, depression, fatherhood, treatment and vulnerability deserves space in this conversation. I find it very fitting where Mikey’s story takes him next. Through Beyond the Skin HS, he’s helping create resources and support for high school and college aged warriors, reaching people at the very age his own journey started with HS. To the men living quietly with HS, and to every warrior who has ever hidden a scar, a flare, a photo, or a piece of themselves because of this disease, there is room for your story here too. You deserve to be seen, to be loved, to be heard. And you don’t have to figure it out all alone. There is a community here waiting to support you. If you’re ready to share your HS Journey, we’d be honored to tell your story through Uncovered.

Want to keep up with Mikey D?

FB: Micheal Duguay

TikTok: @michealduduay6

IG: @mikeydhsking

Sending love, light and healing with your way. The EmpoweredHSWarrior