How to Help a Sick Friend Feel Less Alone With Her Pain
December 30, 2007 8:48 PM   Subscribe

My best friend has a host of medical complaints (cystitis, a recent herniated disc, upcoming spinal surgery) and I don't know how to help her.What did you need from your friends? Was there a book or movie that helped you feel less alone/less afraid?

She is 26 and feels so isolated because of the pain of her condition, yet she doesn't want it to define her and doesn't want to talk about her illness exclusively. She feels that all of her friends have gone into caretaker mode. I don't want her to feel that her illness has flattened our relationship, but it's hard for me to find other things to talk about while still acknowledging how tough and scary this must be for her. I'll try to be upbeat, but I worry that my "All will be well" stuff sounds trite and unconvincing and ultimately patronizing to someone in so much pain/fear. She's begun getting panic attacks recently because of the stress of chronic pain (she says it's scary because she's so powerless over it). Have any Mefi users been in a similar spot?
posted by The Clink to Human Relations (15 answers total) 5 users marked this as a favorite
Oh, hmm. Kinda been there, and I'm having a hard time coming up with an answer because it was such a damned awful time I don't like to think about it at all, and have deliberately forgotten as much as possible...

Distraction is best. Exhausting her might not be a bad thing if it's a well-spent day busy with something that makes her forget, to the extent possible, all the physical crappiness. A day trip to something interesting in the next town, something like that.

Tell her she's holding up beautifully given everything that's going on; even if she looks awful and is a little nutty, she is still holding up, right?

Try to be interested in at least a little bit of what sort of treatments she's getting. If you can listen to a half hour discourse about the merits and drawbacks of Pyridium Plus, please listen, and offer feedback.

Those last two might be a bit caretaker-y/obvious; sorry. Again: distract. Go out for dinner and talk about current events. Let her tell you when she's not up to something rather than regularly asking if she is up to it/is okay. Find good stuff on DVD and head over for a marathon viewing of whatever show on days when you know she's housebound.
posted by kmennie at 9:14 PM on December 30, 2007

I have been a caregiver most of my life, and have never been sick other than the normal cold/flu stuff. So I can only speak from that side.

It's a delicate balance to be there for her, yet not "be her caretaker." After her upcoming surgery, she will require a lot of help. You may be in nurse mode. But even then, make sure to take breaks for yourself to recharge. As much as you love her, it's easy for resentment and fatigue to get the best of you. As kmennie said, distraction is important, and will be more so then. Of course you can always come back to AskMe during that time for more specific information once you see what the situation is.

Meanwhile, depending on your relationship, you may want to have a brief, honest talk. Tell her that you want to be a good friend, but don't want to patronize her. That as her friend you are willing to do whatever you can to help. But, on the other hand, as your friend, she has a responsibility to you as well, and that is to not be prideful, and to just tell you when she needs help. If you can make a clear agreement about this, it can take away the second-guessing on your part (do I help her out of the car? does she need help lifting her purse?), and it will prevent any bad feelings on her part that you aren't being a attentive enough (why isn't she helping me out of the car? doesn't she see I am hurting too much to lift my purse?).

The fact that you are asking here shows that you care enough that you should do just fine.

As far as a recommendation for movies or books, from my experience with various family members, it all depends on the individual. What is comforting for one person might be upsetting to another.

Good luck, you are a good friend.
posted by The Deej at 9:38 PM on December 30, 2007 [3 favorites]

Hmm, I was trying to find an essay I read years ago -- I'll keep looking. One thing to keep in mind is that a person with a chronic illness may not be able to keep all plans, and may not be able to maintain the her usual side of social relations. (Sort of like the recent AskMe about a father with a new girlfriend and a flaky babymamma.) To the extent you can go with the flow with your friend, and not seemed surprised or dismayed when she needs to cancel, or have you come to her house instead of go out, I think she would appreciate it.
posted by ClaudiaCenter at 10:16 PM on December 30, 2007

This short piece seems useful (not the essay I was remembering).
posted by ClaudiaCenter at 10:19 PM on December 30, 2007

CFIDS article, article on supporting loved ones with chronic illness, here's another piece on friends and family support.
posted by ClaudiaCenter at 10:28 PM on December 30, 2007

I spent a while in hospital after a car accident a few years ago, and I really appreciated the friends who visited me and called. I also got a few great gifts- a sketchbook & markers (so visiting friends could sign the book, as though it was a cast), CDs and DVDs, and some easy-to-read stuff like magazines and funny short stories. Just get fun, intellectually bite-sized stuff to distract her. And send her daily short fun emails with links to funny stuff on youtube, pretty photosets on flickr, jokes, human-interest blogs, interesting short articles, etc.- find stuff on metafilter, boingboing, kottke, etc. Of course you should engage with her about her medical problems whenever she wants to talk about them, but also provide lots of non-medical stimuli for her. And tell her she looks nice even if she doesn't. Say stuff like, "I can't believe you manage to make a hospital gown look cute." But really, as I recall, the best thing my friends did was just show up a lot and bring diversions- recuperation is hella boring!
posted by pseudostrabismus at 2:24 AM on December 31, 2007

Been there for a long period of time a few years ago. It was a completely new feeling for me when the pain just went on and on, nothing helped, and I sort of lost control over my own life. I get panic attacks even when I'm otherwise healthy and I recognise the helplessness you describe.

I don't think you need to be expressly upbeat. Just be yourself, only tone down a bit on your physical ailment department, if you normally talk a lot about those sort of things. That was the one thing, besides pity, I really couldn't stand. People going on and on about their illnesses (real or not) in great detail. I've always hated it, and being in pain myself made it worse.

Things I didn't want to hear, but often did, were

- "Can't the doctors do anything?"
- "Have you tried this drug / dietary supplement / doctor / hospital / treatment method / whatever?"
- "Hi, are you feeling any better today?" (I didn't mind people asking how I was, I just hated the phrasing. "What's up" or "how's it going" would've been so much nicer.)
- "Oh, you look awful / so tired / exhausted!" (One of my friends is still telling me how awful I looked at the time. Not the way to go...)

What would've helped:

Talking about what we'll do when the pain's gone. Making silly and outrageous plans, maybe serious ones too. Take it seriously in the sense that some of your plans are actually carried out when she's feeling better. Make sure she understands you're serious about this.

Bets and dares and challenges for or about the future would've been cool. Just having something positive to look forward to is important, because pain makes you live in the moment in the worst possible way. I had no plans or hopes for the future in that situation. I would've needed distractions and positive things to look forward to.

Otherwise I wouldn't have wanted my friends to bring up my situation. The caretaker mode feels so patronising, even if people are trying to help. Terry Pratchett phrased it well, about his Alzheimer's: "I know it's a very human thing to say 'Is there anything I can do,' but in this case I would only entertain offers from very high-end experts in brain chemistry." That's exactly how I felt at the time: if you're not a surgeon or something, could we please not talk about this (yes, a badly herniated disc is very different from Alzheimer's, but that feeling's the same).

The Deej's idea of a brief and honest talk is a good one. I would've been grateful if someone had done that for me.

Depending on her medication, she may be too tired to watch long movies. I couldn't sleep properly because of the pain, and the medication made me tired too, so I was in a constant haze. I would've found tv series with shorter episodes easier than movies. Maybe The Simpsons, or something similar with lots of seasons and episodes.

It was easier to read books I knew almost by heart than books I hadn't read before. That way it didn't matter so much if I drifted in and out of sleep while reading. And I didn't want to read any great new books because I would've associated them later with the period of my life I really don't want to remember at all.

If you both enjoy the same book(s), could you read them aloud together, switching the reader every couple of pages? Some painkillers can mess with eyesight but hearing isn't usually affected, so it may be easier to listen. Do you speak any foreign language? In my sleep-deprived haze, I would've loved to just listen to the flow a foreign language. Especially metric poetry.

Find things you can do together, something physical or practical. Go for a walk if she's up to it. File old papers, organise photos. Cook or bake something together, but don't offer to cook or bake for her. Be sure to do it together and take some of the food home, so it's not as if you're only doing it to take care of her needs.

You could ask her to help you with something she can do - you know her limits at the moment. That would make her feel she's not the only one needing help. I would've loved to offer suggestions to other people's questions or problems during the time I could only do stuff with either my hazy brain or my hands, and very little else.
posted by kaarne at 2:47 AM on December 31, 2007 [3 favorites]

Great suggestions above. If you have a computer calendar like Outlook, maybe a reminder (daily, weekly) to email her, call her.
posted by ClaudiaCenter at 3:52 AM on December 31, 2007

Spinal surgery at 26? I hope it's for something besides the herniated disc.
posted by gramcracker at 5:29 AM on December 31, 2007

i had knee surgery last month (my third), and have been having chronic pain of various sorts for longer than i would like. in terms of feelings of powerlessness, i've been really into the guided imagery meditations from it's up to you whether you could suggest those without feeling patronizing.

don't feel like you need to be upbeat. i got so tired of healing "get well soon," as if it were up to me, as if there were even anything i could do to be able to walk any sooner than my knee was able to heal itself. if your friend is sad and scared, let her be sad and let her know that you understand why she is sad and it's a reasonable reaction and ok to feel.

if she is confined to her house, keep inviting yourself over, don't make her do all the work. suggest activities you can do together -- bring over movies, offer to help with things around the house she might have trouble with (cleaning, cooking) or like company with (play a board game, do crossword puzzles, other fun low-key stuff that has nothing to do with her illness) or like some help or motivation to do (e.g. kaarne's suggestion to file old papers or organize photos). rather than asking "is there anything you need help with?" try to be specific: "can i do your dishes? 'nother cup of tea? i'll be in your neighborhood tomorrow, is there anything i can pick up for you and bring by?"
posted by nevers at 9:27 AM on December 31, 2007

I'm almost sort of recovered from fusion surgery, so I can talk a little about the first few days. I'm sort of a loner and don't suffer from panic attacks, so you'll have to take that into account. In the hospital, lots of people came to see me, and what I remember about almost all of them was that they stayed too long. I would have preferred that they stay 10-15 minutes, tops. Not so much of my shyness, but because recovering from back surgery is exhausting and even watching TV is work. Going across the room to the bathroom is an adventure all by itself.

The hospital didn't want me to be by myself for the first few days after being released from the hospital, so I moved in with my ex-wife. I mostly slept, watched TV, and kept logs so I could know when I was allowed to take my pain medication. I ate, but only about a third of what I would normally eat. I went for a walk twice a day, starting out with a trip to the end of the neighbor's lot and working my way up to the end of the block (Yay! Two hundred feet! And Back!)

After three days, I was getting a good feeling of why she was my ex-wife, so I moved back to my own place. I ate frozen pizzas, spaghetti out of a jar, steak, stuff that was easy to fix because I couldn't stand up for more than five minutes at a time. I watched a lot of the Game Show Network and generally TV that didn't require a long attention span because opiates really mess up the higher cognitive functions. I wasn't supposed to drive and I couldn't lift more than five or ten pounds so people doing errands for me was really nice.

So, if you were my friend, and I were going through back surgery, this is what I would like you to do. In the hospital, keep the visits short with light conversation and some hand holding. In the first few days after release from the hospital, make sure your friend is not alone for very long, light conversation and hand holding. And then, starting about a week after the surgery, make sure there's someone who can run an errand for her just about every day for medication, food, whatever. And if she has walks to shovel or a lawn to mow, she won't be able to do that kind of thing for about six months or so; she might like some help making arrangements about that kind of thing.

And for the first few weeks, your friend will get stronger every day, although it might not feel like it. You might remind her every once in a while how yesterday 400 feet was a long walk and now she can walk 600. That sort of thing.
posted by faceonmars at 11:41 AM on December 31, 2007

Seconding the no "get well soon" cards. The OP is not so clueless, but it's worth emphasizing. I know a person who received "get well soon" cards while in hospital for C8/T1 spinal cord injury.
posted by ClaudiaCenter at 2:01 PM on December 31, 2007

I was in this position once. I am also in a caretaker position with my mom now. One thing I can say is that if this had to happen to her, it's good that it's happening now instead of later in life, in a way, especially if her condition turns out to be one that cannot be completely ameliorated. This time in one's life is a better time to reconsider one's expectations, when one has much more time to make the most of those revised expectations.

What you can do, as a non-caretaker friend of a similar age who does not have such a condition?

1) Make sure to keep her on your radar, yes. On the other hand, while it's good to be available and supportive it's not good to "check in" in a way that will make her feel like a charity case. I don't think you think she is; I think simply care about her as a friend would. But being in her position it's possible she may interpret certain overtures that way.

2) Understand that if she lets you fall off the radar for a while, it's probably nothing personal. If that does happen, she's probably still evaluating how many spoons she has available, so to speak. Pain is draining. Once she gets into a routine of things that work for her (and/or possibly, hopefully gets completely better), she'll likely hope you'll understand her previous distance and want to re-connect.

3) Personally I had a few control issues when my condition set in. Here I was at the age when I was supposed to be going off into the world claiming my life, and I couldn't! So while I think it's a really great idea to have some suggestions for activities under your belt, the more important thing is to listen to what she thinks works for her, at least for now until she's had enough time to get used to the idea that she has this to deal with and has come to some level of acceptance of it.

4) All of this said, illness and disability can be depressing for people who knew a different way of life before it happened to them. If you think she may be struggling with depression or anxiety, most suggestions of what to do for any other person in a mental health struggle would apply.
posted by RobotHeart at 2:16 PM on December 31, 2007 [1 favorite]

Robotheart, thank you for the spoons thing. I need to save that--I don't know if it will help anyone else understand, and I am gifted with understanding friends anyway, but it reminded me that I'm not alone when my clothes hurt too much to put on, or take off, or even wear.

The Clink, maybe don't do anything, but show up, and make it clear you don't expect her to do/be anything? Having friends who show up to play games then understand and don't expect more of me when I can't move well enough to even talk correctly or pay attention to what we're doing is more than I would ask of them--but they do it anyway.
posted by Cricket at 11:07 PM on December 31, 2007

Response by poster: Thanks to everybody who responded to this thread. I am new to MeFi, and overwhelmed by the generosity, honesty, and thoughtfulness of you folks. This is all really helpful and the links are great.
posted by The Clink at 8:00 AM on January 1, 2008

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