Where Do I Start? How to Share Your Hidradenitis Suppurativa Story
"I want to share my story but don't know how to start."
If this sounds like you, you are not alone. We have heard people in the hidradenitis suppurativa (HS) community say this quite often. Getting started can be the hardest part. Especially if this is the first time you have ever shared your story about living with HS.
Sharing can be scary at first
After spending time and energy hiding your HS, it can be scary to think about suddenly sharing it with others. You might wonder how others will respond or if they will respond at all. Or, you may worry that no one wants to hear what you have to say.
We can assure you, that is not true. At HSDisease.com, we read every story that gets submitted to us. Each and every story has a tremendous impact and helps raise awareness about the challenges of living with HS. You never know who will read your story and how they might be able to relate.
After finally taking the leap, many people will say they cannot believe they waited so long to share their stories with others. Some will even say that talking about their HS is one of the best things they have ever done.
Ready to share?
We have gathered the components that make up many HS stories and outlined some pointers to walk you getting started. While there is not a single format or structure for a story, we hope these help you with sharing yours – whenever you are ready, of course. Let us get started!
Start with a short introduction about yourself. Remember, your audience does not know who you are, so include relevant aspects about your background or interests. How long have you been living with HS symptoms? If you have been diagnosed, share about that experience and how you were feeling about it.
Your symptoms and treatment
Many people will open up about their symptoms and what they have been doing or trying to manage them. They talk about their visits to the doctors and what they are learning about their condition. Have you undergone any tests? What treatments, if any, are you using, and how has that been going?
How you are doing today?
The end portion of your story could include a reflection or an update on how you are doing. Have you made any progress since the beginning of your journey, or have things gotten worse? What mental hurdles are you facing? Have you found support online or in-person? What are your hopes or plans for managing your HS?
Have you ever experienced painsomnia?