“I know you’re only in town for a few days, but I can’t join you on a hike in Griffith Park. I’m just going through a really bad flare up and am stuck in bed.”
I’ve lost count of how many times I’ve said something like this to a friend who is visiting LA or to someone who lives here but wants to do something more active. I used to love going on long walks, going out dancing, or planning a day trip. Now, they are things I can rarely do. Some days, I don’t even know if I’ll be able to leave my room to join a friend for coffee or dinner.
About six years ago, I was diagnosed with a chronic skin condition known as Hidradentitis Suppuratia (HS). HS causes painful abscesses and boils to occur near hair follicles, such as the underarms and groin. Since my diagnosis, I have tried numerous prescription medications and treatments. My dresser drawers are filled with oils, creams, supplements, and so on. Yet I still have flare-ups at least once a week.
While it’s affected my entire life — everything from my self-esteem to work — my social life has been upended. I am an extrovert who thrives around people. I love planning dinner parties and joining friends on adventures.
Every canceled plan makes me feel guilty and depressed. Not only do I worry about looking like a flake who can’t follow through on plans, but I also grieve the person I used to be, someone who could go out and enjoy life. The grief cycle never ends. It restarts every time I have to postpone plans or tell a friend I can’t hang out with them. There have been so many birthdays and parties missed due to the pain. I spend many days alone in my bed, only leaving my room to eat and walk the dog.
I can go to bed feeling good, only to wake up and find a new abscess on my body or blood all of my bed as the result of one bursting open overnight. I can no longer plan my days, because I never know if I will feel up for dinner or a yoga class.
I wish I could say I haven’t lost friends over the last six years, but the truth is that I have. Some people found me to be flaky or unreliable. Others couldn’t deal with someone who was so sad and in pain all of the time. I try so hard to mask my physical pain, but sometimes it’s just too hard to hide. I know that I talk about my physical (and emotional pain) quite frequently, but it’s only because I live with it every single day. It’s always on my mind.
A good day is one where the pain is a five out of ten. On a great day, I can block out the pain totally. But it’s always there. I’m constantly thinking about my HS from the moment I wake up. It’s there when I’m standing in my closet looking for clothing that not only won’t irritate the abscesses but will also hide them. It determines if I can leave my house to go to a coffee shop to work or if I’m figuratively chained to my bed or couch. I’m sorry if I talk about my disease and pain too much, but imagine living with it all of the time.
My HS has forced me to redefine my social life and what my support system looks like. Firstly, it’s challenged me to be honest with my friends and ask for what I need. Rather than lying and saying I have a migraine or am too busy to hang out, I just tell them that I am dealing with a flare-up and will have to postpone plans. I have a core group of friends who I open up to about the pain and who I feel comfortable asking to come over and watch a movie if I’m feeling isolated or depressed. I’ve learned how to advocate for myself and not assume that people know what I need.
It’s also made me realize that if I do make plans with friends, it’s important to make group plans, so that I don’t feel as guilty if I can’t make it. Sometimes this isn’t possible, but when it comes to plans that require tickets or have an upfront cost, I almost always make it a group hangout or don’t commit until the day of. Unfortunately, I’ve had to miss out on concerts or once-a-year events, but it’s helped me not feel like I am bailing. It’s just too much pressure to have a friend totally relying on me.
On my good days, I give back and take advantage of the time I’m given. I support my friends through their challenges and hard times. I reach out to say thank you. I check in on people. I make last minute plans. I go on random adventures. My good days may be few and far between, but you better believe that I am making them count. And on the bad days, I sit with my feelings and allow myself to grieve.