Your Hidradenitis Suppurativa Story
There were so many emotions that came up for me when I began telling my Hidradenitis Suppurativa (HS) story. The main feeling was shame. It almost silenced me until one day I realized, if every patient keeps quiet about such a devastating experience then how will we rally doctors and our own communities to support us? However, telling your HS story is all about ownership, not necessarily about broadcasting. Before we can begin telling a story we have to acknowledge there is one to tell. After that, it's about figuring out how to tell that story. I would argue the former is more important than the latter.
Before I started making documentaries or writing for publications I struggled with ownership. I didn't want to accept the reality where I was living with HS. So, most of the time I disassociated until a flare or drainage would bring me back to reality. I even sought out spiritualists under the guise of healing when all I wanted was someone to take the burden of my reality away from me. Coming to a place where I was comfortable to tell my story was very very very hard - but it was doable. The first step I took was realizing I was in denial. The second step was finding acceptance.
Acceptance is a rollercoaster
There are days where it feels like you can take on the world and others where getting out of bed is a challenge. There's a whole spectrum of emotions you can experience and there is no timetable for how long it will take. It all depends on the work you put in. So, how do you start accepting your experience? This might sound relatively simple, but grab a full-length mirror, strip off your clothes (in the privacy of your own space of course), close your eyes, take a deep breath, open your eyes, and stare at your wounds and scars.
If you're like me, you are spending or have spent a lot of your HS journey disassociating. Disconnection is essentially a lack of continuity between thoughts, memories, surroundings, actions, and identity. Something like mirror work can enable you to be present to process your thoughts, feelings, and emotions––even if just for a moment. Some patients might find it difficult to perform these tasks and others might find themselves ready to go full commando. Wherever you are in your journey, patience, compassion, and holding space for yourself are key.
Having patience and compassion
After acceptance, comes developing patience, which should be coupled with compassion. We often extend or seek patience and compassion in our lives, but when was the last time you showed some to yourself? Recently, I wrote an article for Rewire on how to date while chronically ill. One of the experts I spoke to on this topic was trauma coach Julie Fernandez. During our conversation, she pointed out that not having patience or compassion can look like rushing through wound changes or cursing our bodies for the illness we're experiencing. It may seem insignificant, but imagine how you would dress your family member's wounds. Would you rush through it or would you take your time and affirm them when you can?
Your HS story is about embracing all that you are - the good, the bad, and the ugly. You are doing the best that you can and so is your body. There are influencing factors that exist in this world that we cannot change, but it is our job to embrace what we can. So, if there's no cure for HS right now, the next best thing to a cure is accepting your experience and living in that without shame. In the words of the great Brene Brown, "Vulnerability is not weakness. I define vulnerability as emotional risk, exposure, uncertainty. It fuels our daily lives. Vulnerability is the birthplace of innovation, creativity, and change."
Have you ever experienced painsomnia?