Fully Accepting my HS (Part 2)

To this day, I still don't have a specific dermatologist or anyone I go to for HS. I think that’s partly because of the experience of having other doctors not understand HS. I’m sure another reason for that comes from the habit/comfort of dealing with HS alone (I also just had my gallbladder removed and let’s just say this: we do NOT need another medical bill to worry about over here).

And maybe, in that sense, I still haven't fully accepted my HS because I haven't seen anyone other than my general surgeon, who I see occasionally when I have an HS problem. But everything’s a work in progress.

Getting the support you need

I have friends who are understanding of my pain and an amazing partner who is always willing to help. But I also understand that may not be the case for everyone.

But I think support can also mean reaching out to online communities as well. After finding out there were HS communities, I met a ton of other people with HS. I’ve even had the opportunity to meet some of them in person and it was so helpful to have people talk to me about their experiences with HS. Subscribers have reached out on social media and have given me TONS of tips to help me navigate HS and their advice has been life-changing in some ways. Someone even sent me a medical study about the connection between HS/inflammation and the gallbladder issues I was having at the time. It was so nice to feel like I have people I can talk to about that because I truly felt seen and understood.

Sharing my story

I randomly chose to get up one day and share my story, unprompted and unscripted, in front of the world by filming a YouTube video when addressing it for the first time. It was an emotional experience, but luckily, it allowed me to connect with amazing people.

This doesn't have to be the case for everyone, but what helped me to accept my HS was telling people about it. Friends, family, co-workers and my partner were a great start for me. I may not tell every single person I meet if I don't feel safe to do so or if it doesn't feel necessary, but speaking it out loud somehow made it feel less scary the more I did it. It made me feel so much less alone that other people were going through it too and that we could hold space with each other.

Accepting my HS scars

I’ve been open before about the importance of loving yourself and your HS and accepting your scars, but this is honestly still difficult sometimes. I’m used to the scars from surgery under my arms and the scars on my lower legs, but negative thoughts still sneak up on me. Recently, I’ve been having an increase of cysts pop up on my inner thighs and it’s been the bane of my existence for weeks.

Boils have burst open, started healing and scarred up and it’s been painful every step of the way. The scars haven’t been pretty either and as much as I try to stay positive, it’s been messing with my self-esteem the past few weeks.

But then I remember what I always tell myself - our scars tell our stories and they show the battles we fought. For me, accepting my HS in its entirety also means accepting (not always liking, but accepting) the physical results of having a chronic illness. And this has been WAY easier said than done, but time, knowledge and self-love has made the process that much easier.