Tiyana Barnes, a 23-year-old master’s student living with hidradenitis suppurativa (HS), was first diagnosed in 2019. In this video, Tiyana describes how HS stigma has affected her life, and she offers tips for getting the right care for HS.

Before receiving her HS diagnosis, Tiyana experienced a lot of embarrassment. At one medical visit, she said, a doctor misinterpreted her skin symptoms as herpes rather than HS. The upsetting doctors’ appointments caused Tiyana to keep her health concerns from the people closest to her — her mother and grandmother. “It made me just want to hide,” she said. “I kind of just shut myself away from society.”

Finally receiving the correct diagnosis for her HS changed everything: “My quality of life changed after my diagnosis because the fear of the unknown was gone.” Tiyana was able to start learning about ways to manage her HS.

Tiyana’s journey to finding the right medication wasn’t easy. Sharing her situation with her loved ones eventually led Tiyana to the right treatment when another family member living with HS referred her to their doctor. That was the first time Tiyana visited a dermatologist with expertise in HS: “He specialized in that area, which was very uncommon.”

Tiyana learned a lot from visiting different doctors and trying various treatments before finding the right fit for her. She offers these tips for getting the best medical care:

• Be honest about your symptoms.
• Tell your provider if you think you have HS.
• Ask if they have experience treating HS.
• Request a referral if your doctor doesn’t have experience caring for people with HS.
• Get details about all your treatment options, including possible side effects.
• See if you qualify for payment assistance for HS medications.

Tiyana’s experience with HS has brought challenges, but she appreciates the lessons she’s learned. “If I’m having a hard day, literally, I’ll tell myself, ‘Remember when you were so down and out from struggling with the condition? You got through that,” she said. ”You can get through the struggles of life because you’ve gotten through that.’ So I see it as something that helps me get through everything.”

Find Your Team

If you’re living with hidradenitis suppurativa, Tiyana wants you to know that you’re not alone: “There are people out there who experience the same thing as you.” You can connect with Tiyana and others living with HS on myHSteam, where more than 41,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.

Have you encountered stigma about your skin condition? How has stigma affected your life and your health? Share your experience in the comments below, or start a conversation by posting on your Activities page.