Finding Joy While Living With Hidradenitis Suppurativa
As someone who lives with a debilitating chronic illness, it is important for me to recognize what brings me joy and make time to do that as much as possible. Here are some things that I can do with Hidradenitis Suppurativa (HS) that bring me joy.
Being around the people I love
I am an extrovert and I get energy from others. Being around a small group of people whom I love brings me joy! These people include my parents, my best friends, my cousins, my brother, and others. Whether it is brunch, watching a movie, hanging out by the pool, or going to a museum, if it is with someone I love, I am guaranteed to feel better. It makes me feel less alone to have friendships that make me feel supported but also benefit the other person. These relationships bring me joy. That joy in turn helps me cope with my HS.
Going on adventures
This is something I learned to love from my mom. When I was a child, my mom and I would often get in the car and she would ask “do you want to go on an adventure?” She purposefully would take the wrong turn or go down a new road just to see where it would take us. We ended up in little towns by the river, at small cafes and shops, at new parks we had never seen before. With my mom, I was able to explore the entire region where I grew up. I learned to love small adventures in my own backyard.
I took that love with me as I have moved around to different states. Now running small errands can turn into an adventure when I randomly go into new stores or accidentally take the wrong road and find new places. Going on an adventure brings me joy and is something I can do at my own pace while respecting my body.
HS-friendly exercise when possible
I recently moved to a new apartment and now live right next to a pool. Gentle exercise is more accessible to me now as someone with HS (and who loves to swim). Swimming is an exercise that I can do with HS. The water helps to minimize the stress on my HS flares as well as preventing excessive sweat! And it makes me feel good.
Most people know the evidence behind why exercise makes us feel better. It releases positive hormones, it increases our endurance, and, if done outside, we benefit from the sunshine and fresh air. But living with HS, some forms of exercise are just not practical for me. Movement and sweat are triggers for me which makes exercise difficult. Swimming is a way that I can gently move my body with support, feel good about what I am doing, and not sweat too much. When I can be physical in ways that make my body feel better, it makes me feel better!
Crochet and other creative outlets
Being creative feels productive and brings me joy. My favorite hobby is crocheting but I also like to draw and paint. This is something that I can do while taking it easy for my skin but also gives me purpose. I am literally creating something new! I often give my creations to my friends and family which I enjoy as well.
HS can make me feel isolated and alone. Sometimes because of HS, I need to stay home all day and take a break. But watching 10 hours of television can make me feel lazy, bored, and even more lonely. Adding a project that I CAN do with HS, like crocheting, makes me feel like I have a bigger purpose. I am contributing to my own comfort and the comfort of those around me. It also gives me the opportunity to do something else that brings me joy - watching a period drama! My recent favorites include Call the Midwife, Outlander, and Downton Abbey.
Making space for joy
Living with Hidradenitis Suppurativa is hard. It makes me feel embarrassed, frustrated, ashamed, and lonely. But I am determined to not let it take away my joy. These are some activities that bring me joy while dealing with HS. Recognizing them helps me intentionally make space in my life to do these activities more.
On an average day, how would you rate your anxiety related to HS?