Toxic Positivity (Part 1)
Maybe this scenario sounds familiar to you: you are standing in line at your favorite store, buying up all of their 3”x4” self-adhesive bandages they had out on the shelves. It’s kind of exhausting, not to mention expensive. If you could get away with it, you’d just as soon not buy any at all. But you know you can’t take that chance because all over your underarms there’s a bunch of HS lesions that just can’t calm down long enough to be trusted to go bare. This thought pops into your mind. It’s supposed to make you feel better. “Hey, it could be worse. I could have no arms at all, like that lady I saw at my doctor’s office.”
When you get home, you unpack your bags and stack your boxes on your shelves. It looks like a lot now, but you know that those bandages will disappear quickly as your body lets go of infection upon infection. It’s so exhausting to think about. And the money! It’s almost as if those little boxes of adhesive pads have dollar signs all over them. Then you sigh to yourself and think, “Well, it is what it is.”
Wishing I could just go shopping with my friend
Your cell phone starts to buzz and chirp, and one of your good friends calls to chat. That person notices that you sound a bit flat, and asks if everything is okay. You confess that you have just gone on another shopping spree, but it has been for “stupid” bandages, and you’d rather be shopping for a cute top in pastel colors without caring if putting your arms in the air would reveal a crazy, ugly mess. And your very good friend says, “Oh well. It saves you money on buying clothes, right?” And you agree, but you wish you could be normal and just go shopping with your friend to buy a cute top.
Your friend can tell that you are still not cheered up, and she says, “Maybe you should try meditation, or acupuncture. Try something that’s positive.” You agree to consider those options, because you know she cares about you, and you wrap up that conversation.
It's depressing to talk about my pain every day
Then your phone beeps with a notification that you have gotten a text. It’s from a close friend who messages you nearly the same question every night. How are you? Are you better? Has your pain gone away? You pause, because it’s the same question, every single night. So at first you try the easy answer: Hi, I’m okay. How are you doing tonight? And her response is: Oh, if you are okay, that must mean you are better and you don’t have any pain anymore. I’m glad to hear it.
Well, dang, that’s not at all what you meant. So you send a text that you have sent nearly every night and ask, Is it okay if we don’t talk about my pain every day? I have a chronic condition that will never heal, I am in pain every day, and it’s really depressing for me to think about it and talk about it every day. She doesn’t respond. But it’s still very likely the same exchange will happen tomorrow.
In the meantime, you’re getting some pings on social media sites because of items you’ve posted. Recently you had some lesions surgically removed, and it’s going to take a while for those to heal, especially since they were not closed with any stitches so HS would be discouraged from forming any new lesions.
At the same time, you found out your dermatologist is moving to another state. That means you have to go through the process of finding someone who is just as knowledgeable of HS as the doctor who is leaving, and the very thought of having to find someone new and actually trust them is nearly panic-inducing.
Why didn't calls from friends help?
The responses to your posts regarding these two HS events – the surgery and having to find a new doctor – are less than encouraging, even though on the surface they seem to be just fine. They range from: What’s the big deal? You’re a strong person, you always come out on top. To: You always seem to have a good sense of humor, just keep smiling.
Now that you have a minute to yourself, you sit down and just kind of let all of these ideas and feelings roll through you. Why don’t you feel better? Why didn’t the call from your friend make you feel good, like you actually wanted to tackle meditation? Why don’t you feel like only looking on the bright side?
Check out Part 2 of this series!
Where did you first hear about hidradenitis suppurativa?