How To Talk About Being Potentially Unwell
May 20, 2015 2:30 PM   Subscribe

I have been living with a chronic health condition for twenty years. Next weekend I am celebrating a friend's forthcoming nuptials at a weekend retreat. This involves spending a lot of time in the company of strangers - unfortunately my condition has flared up recently which means I'll have to tell these strangers that a) I may become unwell and b) how to deal with me if I become unwell. Help me figure out how to deal with this without committing any social faux-pas.

The condition itself is undramatic (it is not life-threatening; it is not contagious; absolute worst case scenario is me needing a hand up a staircase), but I'm really worried about how to address being unwell. I don't talk about my condition much because it's mostly invisible and usually does not affect me in public. Do I do an info dump during introduction? Will I need to tell complete strangers that I'm going through a bad phase? Do I print out a card of "What To Do if XYZ Happens" to carry on me at all times?

Note #1: Several of my closest friends will be there - they all know about my condition and one's a health professional.

Note #2: Obviously I could avoid going to the weekend retreat, but we have been planning this for ages and I'd hate to miss out on spending time with friends old and new in a beautiful setting.

Note #3: Activity level is set to "knitting whilst watching bad sci-fi films."
posted by kariebookish to Human Relations (15 answers total) 2 users marked this as a favorite
Can you inform several close friends of your needs, and then make sure you have a buddy with you at all times?
posted by BrashTech at 2:32 PM on May 20, 2015 [1 favorite]

Needing a hand up a staircase doesn't sound particularly like it requires much in the way of disclosure. Is this a condition where you suddenly need someone to carry you? It's not clear how suddenly or severe this is, but you're concerned about telling people What To Do if KB becomes Unwell, and that sounds a bit more challenging than just needing a hand up?
posted by canine epigram at 2:36 PM on May 20, 2015 [8 favorites]

Best answer: kariebookish: "Several of my closest friends will be there - they all know about my condition and one's a health professional. "

This seems like enough to me. Unless whatever might happen is going to be life-threatening very quickly, as long as there are a few people around who know what's up, you should be fine. If something happens, word will get around, and one of those people will explain and help. A medic-alert bracelet or similar is probably not a bad idea though.
posted by Rock Steady at 2:36 PM on May 20, 2015 [7 favorites]

I have a chronic health condition that is luckily under pretty good control and the worst case scenario for me is that I might have to suddenly interrupt a conversation to run top speed to a bathroom. I don't tell anyone in advance. Let them think I'm rude if I say, oops pardon me, and scoot off. I can always come back and say, Whew, that was a close one! Let me tell you about ulcerative colitis!

If the worst case scenario for you isn't a sudden incapacitation that doesn't allow you any time to blurt out what's happening, like, say a sudden fainting spell, just leave it. Even if it is sudden fainting spells, no one needs to know that they are symptoms of a larger problem unless you want to tell them.
posted by janey47 at 2:36 PM on May 20, 2015 [9 favorites]

Just stick with telling your close friends. If a stranger inquires, then briefly tell them that you are having a flare up of a chronic illness but are mostly fine. It will be okay. Feel free to change the subject.
posted by myselfasme at 2:37 PM on May 20, 2015

Doesn't sound like you need to mention it to anyone.

If the worst case scenario is that you need a hand up the stairs, the general activity level for the weekend is pretty sedentary and you have several close friends there who know about your condition, it should be fine.

Does the condition leave you unable to explain what you need? If I were with a stranger in a scenario like this and they became unwell, the first thing I would do is find one of their friends. If you're going to be concious and lucid when you become unwell, I see no reason to disclose anything unless it becomes necessary.
posted by missmagenta at 2:40 PM on May 20, 2015 [7 favorites]

Best answer: Make sure your close friends are all aware and have some sort of something on your person (medic alert bracelet, notecard in your pocket) that the friends also know about that explains the most important details and your doctor's phone number should you become incapacitated. I've got a medic alert bracelet and I feel like that's sufficient for the kind of disclosure I need with my usually very mild chronic thing.

Don't let this dominate your trip! There's no reason anyone else needs to know.
posted by phunniemee at 2:41 PM on May 20, 2015

Response by poster: It's not clear how suddenly or severe this is, but you're concerned about telling people What To Do if KB becomes Unwell, and that sounds a bit more challenging than just needing a hand up?

Sorry - apparently I'm even uncomfortable disclosing things during a AskMeFi question!

Sudden fainting spells and slurred speech are faint possibilities, but I've not experienced any of the symptoms for a long time. I am not on any medication bar painkillers.
posted by kariebookish at 2:44 PM on May 20, 2015

i feel like between your close friends knowing the specifics and people naturally knowing how to deal with a fainting person, you will be covered. i totally understand that you might have anxiety about this, i also have anxiety related to a chronic condition, but i think it sounds like you already have the informed support you need.

i hope you have a great time!
posted by nadawi at 2:55 PM on May 20, 2015 [2 favorites]

I think you don't need to worry about this at all. If something happens that requires disclosure, then you can tell them the bare minimum and do it with a smile and most people will be like, "oh, okay," and move on. This is going to be a much bigger deal to you than to everyone else.
posted by something something at 2:56 PM on May 20, 2015 [2 favorites]

Best answer: Yeah, agree that there's no reason for you to disclose anything if the worst symptoms are "faint possibilities." In fact, I think it would be really weird and inappropriate for you to say anything about this to strangers. If you're nervous that it might actually become an issue, just make your close friends are around in case you need help and that's that.
posted by holborne at 3:09 PM on May 20, 2015 [2 favorites]

I sometimes have fainting spells and don't tell anyone ahead of time in similar circumstances. But the flip side of that is that I need to be hyper alert of how I'm feeling at all times and not afraid to say something very early if I'm not feeling well. So instead of waiting until it's very apparent that I'm going to faint, at the first symptom (for me it's a specific kind of hot flash), I take off extra layers, get a drink of water, sit down. If I have to interrupt someone, I just say, "I'm sorry, I am not feeling well and just need a moment."

If it becomes obvious that that's not going to be enough, I will actually lay down on the floor wherever I am and tell someone nearby that I might faint and what to do if I do (Leave me lying down, elevate my legs, call someone). This has only happened to me once while I was pregnant and I was at a doctors office so it wasn't a big deal. you don't need to introduce people to your health condition if you don't want to and the risks are small but they will need to help. Especially if you can just ask for specific help as you needed if something does go badly.
posted by peanut_mcgillicuty at 3:46 PM on May 20, 2015

Best answer: I have a similar condition, and I've found that it isn't so much the immediate problems (suddenly feeling faint for example). I can just say "I need to sit down" or "I have to find a bathroom." It's when you need to sit and knit and others are doing something else, something fun, something they're sure you'd want to do -- at that point I say, "I'm sorry, I have a Syndrome and it's knitting time for me." Saying "Syndrome" with a smile almost always shuts everyone up. Sometimes the smile part is the hardest, but protect yourself and make no excuses. I do encourage you to go, even it will sometimes be hard. It's easy to let your life get smaller, but good times with close friends can nourish you through a lot of times you're alone on the couch.
posted by kestralwing at 3:49 PM on May 20, 2015 [3 favorites]

So I'm hypoglycemic, and sometimes the symptoms look like I'm falling down drunk. I also have social anxiety, so having a bunch of strangers think of me as a fall down drunk is terrifying. I like the buddy idea. Just someone to look out for you and can rush over to help. Also, saying "I have a medical condition, it's no big deal," is, well, no big deal.
posted by Ruki at 3:54 PM on May 20, 2015

Response by poster: Thank you all so much - it's good to hear others put things into perspective and I can now get on with all the prep :)
posted by kariebookish at 6:09 AM on May 21, 2015 [1 favorite]

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