Does Talking About HS Cause Me to Experience More Flares?
Choosing to use my voice to advocate for Hidradenitis Suppurativa awareness has led me to create connections, discover new avenues to share my story, and also be more hyper-focused on my disease than ever.
You see, using my voice to publicly advocate for HS has left me having many conversations with myself about how I want the world to view my disease. I have chosen to go online and share intimate details of my experience in an effort to make HS a more easily understood disease. On one hand, I have joined the ranks of other advocates to make HS a more identifiable disease, and on the other, I have made my own understanding of HS more complex.
It turns out that HS is not as rare as most people think it is and there is quite a bit of information online being shared by other warriors. I find myself always doing research on what foods I should and should not be eating, looking at wound healing agents, and the different treatment options that exist. Seeking to establish a healthy balance between being all about HS and living my everyday personal life has proven tough at times.
Why is it that sharing my experience makes me flare more?
I am constantly teetering along the line of “out of sight, out of mind” and realizing that my illness only adds to my power. On a low pain day or the occasional no pain day, it is a joy to be completely immersed in an activity and almost forget that HS even exists. At other times, I feel like being all about HS awareness and educating others takes a toll in real life as I examine my own thoughts about the disease and the impact it will have on my life. In short, I sometimes wonder if sharing my story increases my subconscious stress levels which in turn makes my illness worse.
I think back to advocating online for HS Awareness Week and the joy I felt in my heart to hear people who knew little to nothing about HS tell me that they appreciated me using my voice. I felt empowered to be in communication with other warriors as they shared their stories and experiences with treatment options. Feelings of validation of my experiences and building community are leading drivers in why I choose to advocate digitally. However, during awareness week I also felt overwhelmed as night set in and I had to sit in my thoughts about how HS impacts my everyday life. It was overwhelming receiving comments applauding me for using my voice in a fight that I know can get downright ugly. It still to this day is overwhelming when I receive messages from other warriors asking me for advice when I have little to give myself.
Talking about my HS can be an emotional rollercoaster
Really simple questions like “How is your HS doing?” trigger feelings of discomfort and lead me to start sweating profusely. It is like these questions are calling out my disease and shining a spotlight on the most personal part of me. Yet still, I appreciate those questions.
I say all this to say that battling a chronic illness often takes me on an emotional rollercoaster. Some days I want to talk about it all day to anyone who will listen. Other days, I would rather ignore my illness altogether and just live in the moment and experience life as I used to. It is a privilege to be able to use my voice to advocate for HS and it is also a right for me to focus on my own physical and mental health so that I can continue choosing to find power in my diagnosis.
How has your HS affected your relationships with friends and family?