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Well...Where Should I Start?

My name is Linda Sagastume, I’m 21 years old, I was born and raised in a little country called Guatemala. I have one brother and a twin sister, 4 dogs, 1 rabbit, 2 goats and a few chickens. I’m currently living in North Carolina with my mother, my step dad, my sister, my step brother and all my  animals. I moved to the U.S. with my twin sister and my mother in 2016, but as you can tell now we have a big family with a lot of animals. I’m currently a college student and I want to become a physical therapist. I’m bilingual, I love to travel and help others. One of my favorite hobbies is making tik toks and videos for social media. I currently have around 150k followers in all my social media. 


Now that you know a little bit about myself let me tell you about me living with HS. Everything started when I was just 13 but I didn’t get diagnosed with HS until I was 19. I’m not going to lie to you. It was a very hard day for me. It was hard because I knew this was going to be on my body FOREVER and so I started asking myself all these questions like “what about all these scars, am I going to die or what?” I was only 19, don’t get me wrong, I was not a kid but still it was something very hard for me to process especially when I had this for so long and I was hoping that we could find a solution for it, and yes we found a solution but not the type of solution I wanted.


Having HS really changed the way I see life now, it is hard for me to express the way I'm feeling because I feel like no one can understand how I am feeling or they would tell me to stop being extra. I see life differently because I care about myself and my mental health a LOT. It took me a couple of years, tears, pain and stress to understand so much about this and I know it’s hard to find calm during the storm but you have to be patient. I’m the only one with HS in my family, I have the honor to be the first one haha.


 HS for me means “take care of yourself and get to know your body”.  I feel like when you take time to know you and your body you would find comfort, no you don’t need professional help for this, because really no one but you can do this. I spent my teen years with this now I’m in my 20’s with HS, and yeah it is not perfect, but it gets better.  You’re probably wondering how things get better while having HS, all the bumps, the scars, the smell and the pain. Trust me not every day is a good day for me, sometimes I break and I see myself and the mirror and ask why me? After 8 years I still don’t have an answer for that, but I won’t stop living my life because of a disease, fuck it, I’m going to show this disease that I’m strong and that I can beat it. Even though there’s no cure for this condition I still believe that one day were going to wake up with great news about a cure for HS, and I can’t wait for that day to be here, while that happens I would take care of myself eat my favorite food, do my workouts, do what I love, get a college degree, keep living life no matter what. 

I still have a lot of fear about my scars, I don’t feel comfortable wearing short sleeve shirts and that's ok!!! I’m also scared to find love. I constantly ask myself “who is going to love me like this?” I know I shouldn't hurt myself like this and I’m working to be more positive about it, but It’s hard.  I know there’s someone out there who will love me just the way I am. I've learned to be patient with myself.  You need to take time for yourself, don’t rush anything. If you want to cry, then cry.  If you don’t want to share your story, then don’t. No one can force you to do something that you don’t to want to do.  Take your time.  Trust me, when you share your condition with others you’re going to find someone who’s struggling just like you are, maybe a friend or a family member but you won’t know until you start sharing and you never know, you may inspire others to do it too.


My HS journey hasn't been perfect at all, I would never EVER wish this condition on anyone; it takes so much physical and mental energy and it’s hard.  Sometimes my family doesn’t get it and I wish I could describe it with more than words so they could understand me a little more. I’m always happy to help anyone and I would be more than happy to help you or your teen girl or boy, if you need anyone to talk to please contact me you can find me on social media Facebook, Twitter, Snapchat, TikTok, or Instagram! Just DM and I would be more than happy to talk to you. Stay strong, we got this !!!!

With love for you, Linda Sagastume