If I Avoid It, It Will Go Away, Right?
Despite all of the articles I've written, the videos I've recorded, and the campaigns I've been a part of to bring awareness to hidradenitis suppurativa (HS), I still have a hard time accepting the cards I've been dealt. Mainly because HS feels like a behemoth standing on my chest. It feels like the center of my existence. All that I am. Logically, I know this isn't true, but emotionally it feels that way. So, I have these moments of ignoring my reality until a pain shoots through my body or I see the disfigurement I'm forced to live with.
Being a better version of myself
Knowing that I can't escape this fate only makes my mental health worse because I imagine life as another being for just a hint of relief. But wishing I was someone else only increases my depression because the reality is that I will never be whoever this person is that I imagine. Even if that were possible, there are battles that person faces that I am unaware of. And why would I want that?
The only thing I can be is a better version of who I am now. What does that look like? I imagine it looks like being unashamed and having full acceptance. I also think it means not centering HS so much in my life or maybe finding other outlets when HS is just too much. There are hobbies in my childhood waiting to be explored again.
Avoiding HS will not make it go away
What I do know, is that avoiding my HS doesn't make it magically go away or get better. It only perpetuates or amplifies the negative feelings I have. As I am realizing this, I can only imagine how other HS patients and patients who are positioning themselves as "influencers" and "experts" in our community feel.
Am I the only one longing for a body that is not mine? I can't be.
I want to accept myself fully regardless of whether I am healthy or not, whatever that may look like. The only thing constant is change and that means that even a healthy body can battle illness. So, there's a deep acceptance that goes beyond affirmations, beyond eating the right foods, and beyond being an advocate in the community. I am not where I want to be on my acceptance journey, but what I know for sure is that I don't want to pretend anymore.
Have you ever experienced painsomnia?