Hi everyone, my name is Lindsay and I’m a 22 year old woman from Ontario, Canada and I have HS disease. This is my story…
I was 15 when the bumps first started, and when I went to my doctor I was told that it was just a cyst and to take antibiotics and it will go away. After 2 years of that, when I was 17 I woke up one morning not being able to move my arms. I had to go to the hospital and get emergency surgery for it. At first they tried to drain them, but the doctor ended up just cutting them out.
When I was 17 I went to see a general surgeon who said that it was HS. I then got a referral for a dermatologist who confirmed my diagnosis. My treatment continues today with a surgeon who specializes in HS. Currently, I go for check-ups every 3 months and it depends on my bumps at the time what kind of treatment I receive. If I don’t have any then nothing is done and if there’s a start of one then I’ll get a steroid injection. If there is a full blown one it usually gets cut out.
There are 3 stages of severity with HS and I’m in stage 2. Along with battling HS, I also have to deal with a brain disease. The area of my life that HS has impacted the most would be in my favorite hobby, fishing. If it’s too hot or I have a flare up I can’t do it. I try to stay positive while dealing with the negative feelings often associated with HS by talking to my mom about it. She is my biggest support when it comes to this.
I have told the people around me about my HS. My family helped me as much as they could, and they continue to be my biggest support with this. When I was first diagnosed none of my friends believed me, and I became very closed off about telling new people.
That was until I found a new job at a veterinary emergency hospital. It was there that I met people who understood that there are illnesses that can be painful that you can’t always see. When I finally found a group of people who believed me, it totally changed my world. I felt accepted for my HS with people who weren’t part of my family. It meant not being afraid to wear tank tops because I was afraid people would see my scars. It meant being comfortable in my body.
I do have my own Hero in my life that helps me get through the extra hard days, and that person is my Mom. She does whatever she can do to help me when I’m having a flare up. If I’m having a bad day and feeling bad about my scars she reminds me that they tell a story and to be proud of my story. I was so scared when I was first diagnosed, but she did all the research she could to make sure I didn’t feel alone. I knew that she was there, has always been there and will always continue to be there.
When I have a really bad flare up my biggest trick is to wrap an ice pack up and put it under my arm. It soothes the Inflammation and helps with the pain. I’ve also found that cutting out dairy is very helpful for me. I would say a positive experience I’ve had related to my HS is seeing Dr. George. He has made everything as positive as it can be since I started seeing him when I was 17. He has watched me grow up with this and has always been there for me. If I could say anything to a HS Hero that was struggling, it would be that you are not alone. I know it’s hard and it feels like the world is against you but it’s not, and there is an amazing community of people out here to help.
Never be afraid to ask for help!