Linda

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I’m 20 years old and I am a HS warrior from North Carolina. Everything started when I was just 13, everyone thought that It was an allergic reaction, but eventually the bumps were getting bigger and bigger.

 

I remember the first time that I went to the Doctor for this and he told me that it was an infection and that we had to wait for the right time for him to get the infection out of my body, so he gave me antibiotics and also medicine for pain. Things started to get “better” but then in 2015 (I was 15 years old) everything got worse. Back then my parents were getting divorce, I was attending a new school, and there was just too much going on in my life, so I went back to the doctor because my bumps started to drain pretty bad. This time the doctor told me that everything was because of me being super stressed, depressed and he told me that I needed to calm down, lose weight and start focusing on myself. Once again he gave me antibiotics, medicine for pain, and medicine to go to sleep (to help me with my anxiety).

 

In 2016 I moved to the US, I am originally from Guatemala. That year my HS wasn’t as bad as the year before, however, the scars were there.  In the summer of 2018 I got worse, I had pain 24/7.  I couldn’t sleep at night because the pain was so bad and that’s when I got very depressed.  I gained A LOT of weight and that affected me a lot. I started to get bad acne all over my cheeks and was at Urgent Care all the time because my bumps were super bad and I needed help to stop all the blood that was coming out. I remember one time they gave some antibiotics (just like the past 5 years) but this time was a different one, a stronger one.  I was allergic to this type of antibiotic and had no idea.  This antibiotic caused me not to breathe for a few seconds and I had an anxiety attack at the same time because I didn’t know what to do.  I stayed at the hospital for a few hours then got home and cried.  That was the worst experience I have ever had in my life.

 

In the summer of 2019, after going to urgent care multiple times and having an appointment with a plastic surgeon, I got transferred to the Skin Cancer Center at Chapel Hill, NC. That’s when I knew what my problem was. That day I knew that I had HS for more than 7 years. My heart broke when he mentioned that this disease doesn’t have a cure; my world stopped.

 

HS has been a huge struggle for me on a daily basis.

 

Yes, my self esteem is pretty bad. 

Yes, I deal every single day with my negative thoughts.  

Yes, my mental health is not the best. 

Yes, I cry at nights wondering why me.

 

Why am I the one dealing with this? Am I going to find the right boy that is going to understand this about me? At night I wonder if there’s anyone out there that is going to understand this with me.  Unfortunately my generation is very judgemental and I’m scared of not being enough for someone. 

 

I have learned a lot about this disease. HS has taught me to be patient with myself, to love my scars, to be able to understand others and their pain, to get up and keep fighting because I know the feeling and the struggle.  I wish I had someone when I was younger.

 

I am currently taking Humira and honestly look forward to having surgery done and I have a positive feeling that \surgery is going to remove everything, but for now, I am focusing on myself.  2019 was not a year of good news for me and I let myself get down a lot, but 2020 has been different.  Yes, I’m still dealing with pain and negative thoughts, but I’m taking time to understand myself and my body.  It’s been hard, every day is a struggle, but I’m doing the best I can so if I can do it you can do it too!!! If you know someone who has HS please reach out to them as much as you can, a little bump can ruin our whole day…but a message or knowing that someone is there for us can make a huge difference.

 

If you are a HS warrior, I know how hard it is to start with HS when you’re just 13... I know how hard it is to be 20 and feel like you won’t find the right person to love you and your scars. I KNOW, I understand your pain. My DM’s are open for anyone who needs someone to talk to or if you need someone to understand your pain, I got you. 

 

Don’t forget that your mental health is important. Take care of yourself every single day. Eat your favorite snack, watch your favorite show, get out of your comfort zone. If you need to cry, please cry and let out all those bad things inside your head, but then clean those tears and keep going. We got this !!

 

Linda Sagastume