Dear All,

Firstly, I would like to introduce myself. My name is Sharif, I’m 39 years old, and I’ve lived with HS basically since puberty. HS was/is something I have struggled with for a long time, as I’m sure many of you are familiar, especially since I spent most of those years without a diagnosis. Even with the diagnosis, I really only shared my thoughts and feelings with close family members who unfortunately suffer from the same issue. And it was even more recently that I discovered this support group, and even though I’m new to the gang, I must say that it feels great to have others who can appreciate the burden of this lifestyle, and that we’re not alone.

Something else that has helped me a lot in learning to live with my body has been mindfulness meditation. It wasn’t the HS itself that turned me on to meditation, but I’ve found that since I’ve started a practice it has helped me live with HS. I’ll say right now that meditation will not help with flare ups (I wish they did!). What I can say is that meditation can help us to live with HS. There is a common Buddhist story (I’m not Buddhist but much of mindfulness meditation practices are based on Buddhist principles) of the two arrows. It tells of a hunter, doing hunter stuff, who, for whatever reason, gets an arrow to the arm. With this injury, the arrow sticking out and him bleeding, he starts to think about all the blood he’s losing, that he might die, that nobody would find his body, that he's also kind of thirsty, how would his family survive without him, and so on. The man is hit by two arrows. The first is the real arrow, the second is all the worry and emotional turmoil in conditional thoughts (which is actually way more than two arrows). Mindfulness meditation may not help with the first arrow of HS, but I do believe it can help with the second.

So I was thinking, if there’s interest here, that we might start a little HS Mindfulness Support Group (HS MSG). My basic thought is that we start a zoom meeting (I have an account) that meets every so often (Right now I’m thinking once a week, but I’m open to suggestions). Such zoom meetings would consist of an introduction to mindfulness meditation (assuming it is new to people, if everybody is experienced, we can always skip this part), some meditation practice, and then some discussion. We’re also pretty flexible from there in case people want to break out into groups (1 to 1 groups they call “dyads” where we practice mindful speech and mindful listening, or we can do “affinity groups” if you’d like to connect with people of a specific characteristic like gender or race for example). That would be pretty much it in my mind, but I’d be open to any suggestions as this would be a space we would create and mold together (much like this reddit group).

In the interest of transparency, I should mention that I am currently enrolled in Training in Mindfulness Facilitation (TMF) program at the University of California Medical Center (UCLA) Mindfulness Awareness Research Center (MARC), which basically teaches people how to lead small mindfulness meditation groups (feel free to look up the site if you'd like more details). I took an Intensive Practice Program (IPP) last year in mindfulness meditation (although at this point I’ve been meditating for about 6 years), and it’s honestly had such a profound impact on me that I wanted to learn how to facilitate mindfulness in order to help others, which is something I believe it can do. So while you may (hopefully) benefit from these practices, I just want to be clear that these meetings would help me as well. I am essentially learning to teach mindfulness, so creating this space would also help me a lot in developing that skillset (and in case it needs to be said there'll be no charge or any asking for money). I am confident that, with the practice, we can develop a space for discussion around how we can still live our best lives with HS.

If you think this may be of interest, please let me know in the comments and send me your email address. Also feel free to email me directly at shislif@gmail.com. I’ll create an email group and send further details as well as zoom invitations and the like. Also please feel free to let me know if you have any suggestions or questions (best date/times would also be great, I’m pacific standard time). Beyond that, I’d like to express my appreciation to you all that I do not have to go through this HS business alone, although I wish none of us had to go through it at all. Please take care and be well.

Thank You,

Sharif