Tell us about your symptoms and treatment experience. Take our survey here.

Woman wearing a hat and sunglasses handing someone a credit card; beach scene and boat scene in background

Maintaining a Social Attitude

I don’t know if anyone remembers that show, “The Love Boat,” but in my late 20s and early 30s I earned the nickname of Julie the Cruise Director. I used to work for a large company and also belonged to a huge social group with a very busy calendar, and would sometimes organize outings for up to 80 people that were well-attended. At heart, I am a social person. I enjoy knowing a wide variety of people, and throwing myself into a dizzying array of experiences. At least, I did until my medical conditions, including hidradenitis suppurativa, really slowed me down.

Initially my instinct when I hear about something new that I want to try is, “Yes! I’m going to do that! Sign me up!” My brain is still stuck on Julie the Cruise director mode. I mentally flip through an internal Rolodex, taking inventory of who I may be able to call upon to join me in this escapade. I get a burst of energy and I feel like I can do anything I want to. I have made plans.

There are times when I fully regret saying yes to plans. Actually, now, it’s almost all of the time. That’s because it’s a combination of anxiety, depression, and specifically pain from HS and other co-morbidities. I think about all of the mental gymnastics I have to go through to do whatever it is I agreed to do: is there a bathroom nearby? Will I be sitting or standing? How long will it last? Does it fit in my budget? Does my wardrobe match the activity?

Anxiety about being social

First, why do I get so much anxiety about being social? There can be many reasons why, but if there are unfamiliar people in the crowd, then they may question our pain. They may also offer unsolicited advice, or judge us unfairly. Boy, does that trigger immediate anxiety. And there’s always someone who says, “You don’t look sick,” or “Why don’t you just lose weight?” or “I looked it up and Google says you should stop eating dairy products.”

Second, do you dread having to use a public restroom for first aid like I sometimes do? No privacy and it’s very inconvenient to try to reach specific areas if you are confined to a tiny stall. If you take a long time in the bathroom, is everyone going to notice? I don’t know about you, but I also have to basically disassemble myself in the bathroom with all of my layers, and then reassemble myself when I’m done. It gets old! I’m sweaty and out of breath and irritated.

Third, is there going to be a lot of sitting, or standing, or is it going to be a combination? If I’m going to be sitting most of the time, that requires one type of wardrobe. If I’m going to be standing, that’s another type of wardrobe. And if I’m going to be doing both, well, then I have to think and dress like Sporty Spice and be ready for action.

Fourth, am I going to be out and away from my personal comforts for an extended amount of time? Do I need to pack water and snacks and meds, and maybe a little extra Tylenol? It’s one thing to know if I’m going to be at friends’ houses, but quite another if I expect to be at a large art festival, walking for 7+ hours.

And fifth, and last but not least, does it fit into my budget? That’s a big one. My circumstances have changed since multiple diseases have taken over my body and altered my earning power. I have very kind friends and family who graciously foot the bill if we are doing a group activity, but that doesn’t always happen.

Planning to go out

Always, before I jump into anything, I have to remember to center myself and really think about a few things: if I cancel at the last moment and I do that for everything without explanation, it’s likely that even the best of friends will stop the invites. It’s just human nature. So if I can overcome some of the challenges and make it a good experience, or we can laugh together on how bad it is, then the invites should keep rolling in. And if there’s something I want to do, I can certainly organize it and invite others. But I also have to show up for it!

So, let’s address first aid and the bathroom: do you know where you’re going? Is it a restaurant? A festival? A friend’s house? Are you going on a nature hike, and there’s no hope for a bathroom? All of these are going to call for different levels of discretion. Do you keep anything on you that can double as wrapping material? Can you pack yourself up to lessen your first aid trips? I mean, we always hope for the best, and prepare for the worst. That’s what it comes down to is preparation. I absolutely understand wanting to be spontaneous, but hidradenitis suppurativa doesn’t necessarily allow us to be spontaneous. So in order to do the fun stuff, I think we need to plan.

As far as my wardrobe goes, I’d be hard-pressed to dress up in a fancy outfit at this point in my life. I used to have a much more diverse wardrobe, but as my needs changed, so did my threads. My activities much more closely match my style. If heels would look better, well…I’ll let that spot go to someone else.

HS requires a lot of attention and planning!

Being out for an extended time used to not be a big deal when I was younger. But HS requires a lot of attention and planning, and of course, rest. I am much more aware of my body’s needs when I make plans. No more staying out and having fun until 3 a.m.! Thank goodness my friends generally like to be in their beds by then now too. I usually don’t have to do a lot of convincing to have everyone call it a night.

Budgeting a social life is tricky. I have gotten pretty adept at combing the calendars published by my local community and finding the “free” events. It’s really helpful to sign up for notifications and reminders. I mean, don’t get me wrong – I’d love to see some of the stand-up comics that have been popping up on my TikTok, but I suppose I’ll just go see some ostrich races instead. Awfully close to being the same thing, right? There’s no reason to spend a fortune if you find the gems like these. Also, libraries have things like cultural passes available, which allow one or two people into exhibits and gardens for free. Free concerts in the park and free films in the park are priceless.

Last but not least, fielding questions and deflecting comments from people who don't know us well can really wear us down. My standard go-to is to tell people who want to get too personal with me too quickly is that I have a gnarly medical condition and that I don't take medical advice from others. Much, much later, if I feel the need to share details, I will. Most people will understand that it's not a topic for conversation.

My social life looks different than I thought it would

My social life looks a lot different than I anticipated it would at this point in my life. Maintaining friendships is complicated by also having to navigate my chronic illnesses including HS. I value everyone who I currently call a friend, and everyone who I potentially may have as a friend in the future. I have to keep my brain tuned up to be social, even though it takes more effort. Julie the Cruise Director isn’t ready to hang up the clipboard just yet!

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America survey yet?