Is "yes, but..." okay?
June 7, 2012 5:26 PM   Subscribe

What are the rules of social engagement for people with unpredictable health issues?

I'm recently diagnosed with a serious illness. It isn't life threatening, but I will have it for the rest of my life and will need to take medication and make drastic lifestyle changes to manage it.

Although my doctor assures me I will get to my "new normal" eventually, at the moment I'm still quite sick, dependent on a lot of medications, and generally weak and tired. I expect this to be the status quo for a few more months. I can pull myself together enough to make it to work most of the time (basically the bare minimum to keep from being fired). I have good days and bad days, and on good days I have enough energy to leave the house to do fun, non work things for a few hours (e.g. a short walk, shopping, sitting in a cafe, etc).

My friends have been pretty supportive throughout this situation, although I honestly think they don't understand the extent of my illness -- partially my fault because I always try to make jokes or minimize what is going on so as not to burden them. As a result, I think I am alienating or offending people when I reach my limitations. Knowing that I have good days sometimes, if someone close to me invites me to a meal or gathering, I say "Yes, if I am feeling up to it I would love to." Sometimes (maybe 50% of the time), the day of the appointment rolls around and I can't keep my commitment. Prior to getting sick I was the type to run myself ragged doing a million different activities, so it has taken a lot for me to be able to step back and say "My health comes first, I need more rest today, I can't come over tonight." I know that's the right thing to do, but I also think it's rude, and I've picked up on vibes lately that my friends feel that way too.

I'm scared of ending up isolated and alone by saying no to everything, but I don't want to burn bridges by acting like a flake either. What are the rules in these situations? How can I respect my friends and take care of myself?
posted by anonymous to Human Relations (21 answers total) 10 users marked this as a favorite
Are you comfortable being frank with your friends and disclosing the nature of your illness? Even if not, I think telling them more or less what you just said here should be enough to let them know that you still would like to see them, but you're often not able to. Can you host low energy social occasions, like movie night or quiet dinners, so you can interact with them, but in a way that won't wear you out? Alternatively, scheduling phone/skype conversations so you can keep up with what everyone is doing, from the comfort of your couch?

I'm sure if your friends understood a little better what was happening, they'd be eager to accommodate you.
posted by grueandbleen at 5:33 PM on June 7, 2012 [7 favorites]

I think this is the kind of situation where you need to be really frank with people, who I'm sure will understand, about whats going on and that your energy levels are unpredictable and varied.

Then make sure to cancel as soon as you think you're not going to be up for it and make a point to keep in touch with that friend. As silly as it seems its easy to know logically that its not about you but feel emotionally a little hurt when people cancel last minute. So a text or a phone call the next day - or instigating plans when you feel a bit better might help sooth that feeling.
posted by SpaceWarp13 at 5:38 PM on June 7, 2012 [2 favorites]

A few suggestions, maybe something here will work for you:
  • Instead of going out, suggest staying in at your place. Movies and board or card games are fun.
  • If you knit or sew, you can have people over to do that.
  • If driving or handling your own transit really takes it out of you, work something out with your friends to alleviate this energy suck so that you can still go have a little fun.
Generally think about what kinds of things you can and WANT to commit to, and try to stay within your limits, but be honest when you need to take care of yourself. Which is to say, be honest with yourself and also with your friends - tell them, "my XYZ has been awful all week and I've been trying to rest up/feel better/blah blah blah but it's just not working out." You can add that you would love a low key night of watching terrible reality TV, DVDs, or NetFlix, or you can also say, I feel like such utter shit, I cannot even contemplate getting dressed.

With my friends, respect=trust=truth telling. So respect them by being truthful. Give your friends room to surprise you with their awesomeness.
posted by Medieval Maven at 5:38 PM on June 7, 2012 [3 favorites]

Agreed that honesty is the best policy for this kind of situation. If you find that you're canceling a lot of dinner plans and movie nights, you might have better luck keeping in touch with friends by planning things for earlier in the day. A weekly breakfast or brunch date is a lot of fun, and might get you out of the house for socializing before you sap that day's worth of energy.
posted by vytae at 5:55 PM on June 7, 2012 [1 favorite]

Yes, absolutely - although it helps if these are people you can tell (unrelated to a specific event or outing - just 'hey, I wanted to let you know that I have this health thing going on and it means that ...'). I have been in this position during various periods of my life, and people are usually cool with it if you're able to explain what's up.

And staying in, like MM mentioned, is a great idea - but you should also feel under zero obligation to say "I can't make it tonight, do you want to come over?". That's a good fallback (and also worth doing on its own, it doesn't just have to be a fallback), but if you need to take care of yourself, that comes first.

Just ... be kind to yourself. It can be hard, but it is so worth it.
posted by spaceman_spiff at 6:13 PM on June 7, 2012

Sometimes (maybe 50% of the time), the day of the appointment rolls around and I can't keep my commitment.

This has been a huge, huge issue for me with my chronic illness. I get to the point where I hate to make plans because I don't want to be the jerk who cancels plans, so I wind up not making plans and being the jerk who doesn't ever make plans with anyone.

This has really put a crimp in my relationship with my goddaughters, especially, who are just too young to understand that sometimes Auntie Sidhedevil is too tired to drive or taking medications that make her too sleepy to drive safely or whatever. Fortunately, their mum has now adopted an attitude of "Let's you and I make a plan and if you can make it, it will be a delightful surprise for the girls but I won't tell them in advance so they won't be disappointed if we can't do it."

This probably works less well with grown-up friends; again, I am lucky in that many of my grown-up friends have been through or are going through illness stuff themselves, but it is still a big deal for me.

I find that hosting potlucks works fairly well, although I sometimes knock myself out cleaning and am a little vague for the actual festivities, but that is probably too risky unless you have a partner or roommate or best friend who's co-hosting with you (just in case you need to slip away for a power nap).

One thing that I do do, when I am having a big long patch of illness, to make up for my lack of face time with my friends is to send them wacky postcards or whatever. Just to remind them that even though I'm not up to socializing I am thinking of them.
posted by Sidhedevil at 6:39 PM on June 7, 2012

"Yes, if I am feeling up to it I would love to." isn't enough. It sounds flakey.

Perhaps more like "I have made plans to attend, but we'll have to play it by ear, because when my health issue kicks up - and there is a very good chance it will - I am absolutely unable to participate, no matter what my plans were. I can let you know on the day how things are going!"

(That last point is another way to make sure you don't come across as a flake - being punctual and reliable in at least getting in touch and confirming beforehand whether you are up to it. People who miss things because they can't be bothered or lost track of commitments tend not to be reliable about checking that in beforehand.)
posted by -harlequin- at 7:00 PM on June 7, 2012 [3 favorites]

By not being honest with your friends about your illness, I think you're being disrespectful to the friendships you have with them. How can they read your mind? I think that if you were explain the situation to them frankly and without any "and if you don't want to be friends anymore I understand" stuff, they'll be totally supportive. :) Good luck!
posted by These Birds of a Feather at 7:11 PM on June 7, 2012 [1 favorite]

A more creative idea, though I have no idea if this is a good idea:

You are going to miss gettogethers frequently. Frequently enough that it might make sense to get a few hundred apology cards printed (beautiful prints are shockingly cheap these days), which have a little explanation of health issues, or something warm (a pic of you - "attending in photo because I couldn't attend in person"), and mail afflicted parties.

Basically, regardless of what is on the card, the message you send by the action (of sending a card to someone because you cancelled), would be:
1. This happens to me a lot. It happens so much that I have printed cards about it. It's real and not exaggerated.
2. Don't take it personally - this happens to me a LOT, I'm not snubbing you.
3. My not being able to keep our date is something I took seriously enough to send you a card over it.

If you're clever, you could find a way to make the cards actually desirable. Like it's cool for someone to own one. I can think of a few ways, but it depends on you and your social circles and values.
posted by -harlequin- at 7:16 PM on June 7, 2012 [2 favorites]

"Yes, if I am feeling up to it I would love to." isn't enough. It sounds flakey.

You only need to lay out the more extensive "There's a good chance my health will kick up and then I can't come and then etc etc" explanation the first time. Once your friends know that your chronic health condition is an ongoing issue, you can just refer to it.

I'm a very-healthy person with multiple friends who have chronic health conditions that often prevent them from joining in activities, and they're quite straightforward and honest about it. "Okay, I'd love to join you, Medical Thing permitting." More than once one of my friends has texted ahead to say "Sorry, ran out of spoons, can't come out as planned" or said, in advance, "I'd love to but don't build the plans around my tastes, Medical Thing is acting up lately so I'm 50/50 on being able to join in."

Be honest, let your friends know what's going on, and how it limits you; if they're worthwhile friends they'll understand and accomodate.
posted by Tomorrowful at 7:23 PM on June 7, 2012 [1 favorite]

Your question reminded me of The Spoon Theory, an analogy of what it's like to live with an illness or disability. Perhaps reading it will help you convey the situation to your friends, even if you just email then the link.
posted by youngergirl44 at 7:37 PM on June 7, 2012 [4 favorites]

When you cancel, make sure to send an affectionate text later. "How was the party? I miss you, I'm sorry I couldn't make it tonight. Sometimes this thing just gets the better of me. I hope we can get together soon." Texts take much less energy than a phone call but can go a long way towards creating/reaffirming warm feelings; and you can send it whenever you think of it, even at times when a phone call would be inappropriate.
posted by fingersandtoes at 8:16 PM on June 7, 2012 [1 favorite]

I have a friend who has fibromyalgia, and she's cancelled a few times. She usually calls me, not texts/emails, to tell me how sorry she is she can't come. Also, she doesn't qualify accepting invitations on condition of health because it's implied, but that takes a little time and might not be something you'd want to do until "new normal" sets in.

Overall though, I know she would want to come to things if she could, and I don't want her to come to something and feel bad and sick. That wouldn't be good for anyone.
posted by sweetkid at 8:24 PM on June 7, 2012

In addition to what everyone has suggested above, I know that, if possible, I would want my friend with a chronic illness to not cancel, but invite me over to talk and hang out instead. Obviously, if you were going to a concert or a specific event this may not work, but for dinner and a movie type stuff? Totally. I rather spend time with my friend, I don't care about the dinner and the movie.

Have stuff in the house for these impromptu get togethers: cheese, crackers, ice cream, booze, whatever, so that if you have to cancel going out - but are feeling well enough to have friend(s) in your home - you can invite them over without much effort.
posted by vivzan at 8:49 PM on June 7, 2012

I have MS and at times, without warning, I am unable to follow through with my plans with my friends or with my volunteer commitments. Everyone knows. If you are in my life you will notice at some point that something weird is going on. Some of my friends handle it better than others and because I want them in my life for whatever reason I make allowances for their handicap.

I think it is harder if your illness is invisible. People in general seem to accept and make allowances for something they can experience but are not so forgiving otherwise.

I vote for telling your close friends the nights should be for resting (when I worked that was how it was). Weekends for socializing out if you can or invite everyone over. I have had a lot of parties while on the couch with an IV in my arm. That may sound odd but it is important to my health to not be isolated when I feel like crap.
posted by cairnoflore at 9:33 PM on June 7, 2012

I had Chronic Fatigue Syndrome for seven years, whilst I was in my 20s. I was extremely social and busy prior to my diagnosis, and so it came to a real shock to people when I couldn't be around like I had been. As is typical with this condition, I had bad times (where I couldn't leave bed) and not-so-bad times (where it took me 40 minutes to walk 100-200 metres). I learned a great deal about the nature of chronic disease and friendship during this time:

1) You need to accept that you are going to lose a large number of friends. It's not their fault - most people just don't have any experience of dealing with chronic illness. Many people also feel as if any medical condition can be solved by seeing a doctor, and aren't appreciative of how long the recovery process can take. It's really, really hard going through this process - but please try not to let it get you down too much. It is inevitable, but at the end of the settling in process you'll find that the friends you have left are really wonderful people.

2) You'll need to be honest with people. As others have said, you need to ensure that people are aware of your condition and what that means in day-to-day terms. After a while, I worked out that the best thing to do was to sit people down in a one-on-one setting. I would say something like "As you know, I've been having some serious health issues. You're an important friend to me and I don't want you to feel as if I don't value you. But this health condition has certain effects that means I can't be as social as I used to be". Then you tell them exactly what you can and can't do, plus tell them what your worst case scenario is. Explain to them what will happen if you push yourself too hard - AND BE BLUNT. One of the best things that happened to my social life when I was ill was that a friend came over to my house to stage some kind of health intervention - she kept me up until 2am. The next day I was meant to meet up with her and a few other people. In the midst of everything I fainted quite spectacularly. After that, those people were much more understanding because they had seen what happened when I didn't look after myself - I wouldn't recommend going to those extremes though!

3) Carefully choose your social engagements. Make an effort to go to social engagements that won't take much physical effort on your part. Dinner parties or house parties are good options. Speak to your host beforehand and make arrangements to lie down and even have a nap part way through the evening - then when you feel tired just slip out and take a break. You don't have to be the life of the party, just being there will be enough to keep you socially engaged with people. One thing I tended to do was to ask my host if I could come earlier to keep them company whilst they set up. That would result in half an hour to an hour of quality time with the host prior to the party, and would mean that there was no problem with my leaving early.

Good luck, and feel free to memail me. Chronic illness is bloody hard to deal with on so many levels. Just know that you will 'find a new normal' and that it is possible to maintain friendships until you get there :)
posted by Alice Russel-Wallace at 11:22 PM on June 7, 2012 [4 favorites]

I find it easier (and more pleasant) to accommodate an unexpected person at a social occasion than to have people cancel. So if you were my friend, I would prefer you to say you most likely won't be able to come, and then to unexpectedly call at the last minute if you decide you can, and ask if there's still room for you. The only exception to this is small intimate dinner parties. That way the only surprise is a nice one.
posted by lollusc at 2:56 AM on June 8, 2012

Once your friends know, they will be a lot more understanding. From the cancellee, a few things I like:

Obviously, don't cancel if I have bought tickets to something. This probably means that you cannot accept theatre invitations, etc; if you do, you're on the hook for your ticket cost even if you are too sick. (There are some exceptions here, but in general.)

If you have to cancel, let me know as soon as you can. Bear in mind how much time it will take your friends to prepare/leave/get somewhere, and try to cancel before someone is en route.

Try to find out if a particular engagement is important that you attend or not, and -- when possible -- make special efforts to attend important ones.

Mostly, though, you need your friends to know you have a chronic illness, and to know that you don't cancel unless you have to -- even if have to is 90% of the time. It's more burdensome to think your friend is a flake who doesn't care than to think your friend is ill.
posted by jeather at 4:53 AM on June 8, 2012

Depends on the friends. Close friends should be understanding, at least now and then.

But I think the general rule is that people don't want to hear about it. Don't disrupt the happy vibe, don't make it a Thing. You want people to want you to be around.

Learn how to say of course you'd love to do this but you can't. Take the initiative with calling friends or meeting up during times you know you will be feeling okay (if you can plan those). Leave early or show up late. Learn how to make a graceful exit with a plausible excuse. Get good at plausible excuses. Even if people ask, sometimes they don't really want to know. Maybe be random enough that it just seems like part of your charm. You'll have to be more of an independent agent and take the initiative, unfair as that is.

Take care of yourself. Oh, and trust me in this: don't get bitter.
posted by fleacircus at 5:15 AM on June 8, 2012

Also came in to suggest you forward your friends a link to the Spoon Theory. I found it quite enlightening about people's hidden limitations.
posted by penguin pie at 6:57 AM on June 8, 2012

My good friend's been diagnosed with Fibromyalgia; another's heavily pregnant with a traveling husband and demanding toddler. Both have limitations - one more permanent, one more temporary. Both are unpredictable.

Both frankly say, "I am ___ right now, but I would love to see you. I can do [brunch, movie night at my place, board games, live music at the arboretum] on [pick series of available dates] at [time that works]. When can we get together?" And then I plan around their needs, as do the rest of our friends.

When friends say "We're going to do [X], want to come?" and you agree, then feel crappy and cancel, cancel by saying something like this: "I feel crappy and can't come - I'm sorry, and I do really want to see you! Can we get together at [alternate time/day]?" This is VERY IMPORTANT.

Even if you don't feel comfortable disclosing everything about your illness to everyone, handling the canceling plans part well tells them that 1) you're genuinely unable to come and want to see them, not being flaky; and 2) take charge of the next plans in a way that's more accommodating to your illness without being whiny/flaky about it, which should make the "is this rude?" feeling go away. Also, true friends will be more understanding than you think if you're honest with them, and people that can't handle it aren't friends.

Eventually, this will be your new normal - and your friends will either accept that or drift away from you. (FYI, having fewer friends isn't always a bad thing.)
posted by Unicorn on the cob at 1:25 AM on June 9, 2012

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