Help me give a friend what she needs during a tough time
January 18, 2011 12:50 PM
A friend had some devastating news this week: she is losing her sight and (symptoms indicate) it's due to multiple sclerosis. I am young enough that I haven't yet helped friends through serious illness and lifelong physical disabilities, and I would really appreciate some advice on how I can give her the support that she needs, both in terms of practical matters and the realm of feelings. Much more detail inside.
Two years ago, a good friend had an attack of something called acute myelitis. It's sometimes but not always a one-time phenomenon, and sometimes but not always a precursor or a sign of MS.
After the attack, she was left with some serious disabilities. She has to use a catheter, she has bouts of incontinence, she's often exhausted, and has suffered significant cognitive impairment. As you can imagine, this has been very hard on her.
What's made things even harder is that since the attack her doctors have been trying to figure out if she has MS or not, based on whether things are getting better or worse and whether she has other symptoms (apparently MS is a really hard diagnosis to nail down).
Last week, the doctors observed significant thinning of the sheath around her optic nerve since her attack, indicating that this deterioration is progressive and will most likely lead to severe visual impairment or blindness. This information also confirmed the diagnosis of MS.
From there, of course, it's hard to say what will happen and when. She has an expected lifespan of 5-25 more years (she's 40). She will probably go blind within a few years; she may have limited use of her limbs or might be in a wheelchair.
Some elements that make things harder and more complicated include:
A young son (5 years old).
Far away and emotionally unreliable extended family.
A husband who is callous at best and cruel at worst.
An eating disorder that is barely under control.
An ongoing struggle to appeal a disability claim that was denied.
I would really appreciate advice on how I can support and help her. I'd especially love to hear from people who have coped with life-changing medical news or disabilities: what did you need from your friends? What would you have liked to hear? What were the things that people did that were helpful or unhelpful? What do you wish people have done? How could a friend offer support without making someone feel like an object of pity, or without bombarding them with phone calls that they are not up for returning? How could a friend make suggestions or share ideas in a way that doesn't feel presumptuous or overwhelming? I don't have any illusions that there's a magic thing to say or that I can make everything better; I just want to give her what she needs.
In addition to giving emotional support, I want to be as helpful as I can, but I'm a continent away and can't really help out with things like offering to pick up her kid from school or drop of a casserole so she doesn't have to cook. I also am unemployed and have very little money. Here's what I've thought of so far as far as far as tangibles go:
-I sent her flowers at work last week.
-I leave her messages every other day, knowing that she won't necessarily want or be able to call me back.
-I called the local MS society and got a list of therapists who deal with disability-related issues, since I think she could use some additional emotional support on the ground.
-I have airline miles that I'm not going to use and thought I'd fly her out to visit me for a weekend, if she wants to and is feeling up for it.
-I thought about volunteering to help her out with phone calls to insurance companies, the disability people, etc. if it's possible for her to give me the information that I'd need to be helpful.
I'm open to hearing everything you have to say, but there are a few things that I should clarify:
From the research I've done on MS, I understand that life prospects can vary widely- some people just have occasional attacks, or are just tired sometimes, and some wind up in wheelchairs. But I can't tell her things like "you don't really know if it's going to be that bad" because things are already going so wrong.
I also understand that many people with disabilities live full and rewarding lives. However, she's not at the point where I can give her that speech, and the concrete realities she's facing are a lot for someone to accept before being able to feel like life is going to be ok and that it's still worth living.
So thanks, everybody, for everything.
Two years ago, a good friend had an attack of something called acute myelitis. It's sometimes but not always a one-time phenomenon, and sometimes but not always a precursor or a sign of MS.
After the attack, she was left with some serious disabilities. She has to use a catheter, she has bouts of incontinence, she's often exhausted, and has suffered significant cognitive impairment. As you can imagine, this has been very hard on her.
What's made things even harder is that since the attack her doctors have been trying to figure out if she has MS or not, based on whether things are getting better or worse and whether she has other symptoms (apparently MS is a really hard diagnosis to nail down).
Last week, the doctors observed significant thinning of the sheath around her optic nerve since her attack, indicating that this deterioration is progressive and will most likely lead to severe visual impairment or blindness. This information also confirmed the diagnosis of MS.
From there, of course, it's hard to say what will happen and when. She has an expected lifespan of 5-25 more years (she's 40). She will probably go blind within a few years; she may have limited use of her limbs or might be in a wheelchair.
Some elements that make things harder and more complicated include:
A young son (5 years old).
Far away and emotionally unreliable extended family.
A husband who is callous at best and cruel at worst.
An eating disorder that is barely under control.
An ongoing struggle to appeal a disability claim that was denied.
I would really appreciate advice on how I can support and help her. I'd especially love to hear from people who have coped with life-changing medical news or disabilities: what did you need from your friends? What would you have liked to hear? What were the things that people did that were helpful or unhelpful? What do you wish people have done? How could a friend offer support without making someone feel like an object of pity, or without bombarding them with phone calls that they are not up for returning? How could a friend make suggestions or share ideas in a way that doesn't feel presumptuous or overwhelming? I don't have any illusions that there's a magic thing to say or that I can make everything better; I just want to give her what she needs.
In addition to giving emotional support, I want to be as helpful as I can, but I'm a continent away and can't really help out with things like offering to pick up her kid from school or drop of a casserole so she doesn't have to cook. I also am unemployed and have very little money. Here's what I've thought of so far as far as far as tangibles go:
-I sent her flowers at work last week.
-I leave her messages every other day, knowing that she won't necessarily want or be able to call me back.
-I called the local MS society and got a list of therapists who deal with disability-related issues, since I think she could use some additional emotional support on the ground.
-I have airline miles that I'm not going to use and thought I'd fly her out to visit me for a weekend, if she wants to and is feeling up for it.
-I thought about volunteering to help her out with phone calls to insurance companies, the disability people, etc. if it's possible for her to give me the information that I'd need to be helpful.
I'm open to hearing everything you have to say, but there are a few things that I should clarify:
From the research I've done on MS, I understand that life prospects can vary widely- some people just have occasional attacks, or are just tired sometimes, and some wind up in wheelchairs. But I can't tell her things like "you don't really know if it's going to be that bad" because things are already going so wrong.
I also understand that many people with disabilities live full and rewarding lives. However, she's not at the point where I can give her that speech, and the concrete realities she's facing are a lot for someone to accept before being able to feel like life is going to be ok and that it's still worth living.
So thanks, everybody, for everything.
What selton says. Every few weeks I have well-meaning acquaintances and co-workers and the sort of distant relatives I see at weddings and funerals e-mailing me news stories and new theories and old wives' tales about cures. I recommend you not be that person, but tell her you are open if she wants to talk.
I am closing in on twenty years since diagnosis. Everyone's course is different. The bad news is that the later in life it starts, generally the steeper the decline is, and with your friend being diagnosed at forty she will likely have a rougher time than someone diagnosed at twenty.
But there is a lot of may and might and possibly involved in any discussion of it. Even to the point of the diagnosis itself, which, as you mention, is hard to mail down. My neurologist in the early 90's told me he was "99% certain" it was MS, and that still is the going theory.
Really, as I say, it is up to her to let you know what is most helpful. Of the points you mention above, I think offering to make calls for her would be the most useful. The two most common symptoms are fatigue and depression, and it can be discouraging to come up against blank walls when you are the one suffering the disease (and it can sometimes lead to taking it personally, which increases stress, which in some cases triggers further attacks).
I wouldn't presume much more than that -- many people with MS want to maintain their independence as much as possible, and it can be easy to feel patronized by well-meaning friends who are too solicitous. Let your friend be your guide in this.
posted by ricochet biscuit at 2:08 PM on January 18, 2011
I am closing in on twenty years since diagnosis. Everyone's course is different. The bad news is that the later in life it starts, generally the steeper the decline is, and with your friend being diagnosed at forty she will likely have a rougher time than someone diagnosed at twenty.
But there is a lot of may and might and possibly involved in any discussion of it. Even to the point of the diagnosis itself, which, as you mention, is hard to mail down. My neurologist in the early 90's told me he was "99% certain" it was MS, and that still is the going theory.
Really, as I say, it is up to her to let you know what is most helpful. Of the points you mention above, I think offering to make calls for her would be the most useful. The two most common symptoms are fatigue and depression, and it can be discouraging to come up against blank walls when you are the one suffering the disease (and it can sometimes lead to taking it personally, which increases stress, which in some cases triggers further attacks).
I wouldn't presume much more than that -- many people with MS want to maintain their independence as much as possible, and it can be easy to feel patronized by well-meaning friends who are too solicitous. Let your friend be your guide in this.
posted by ricochet biscuit at 2:08 PM on January 18, 2011
A continent away; that limits, for sure.
Be the friend you have always been. It's not like she's not able to understand, it's not like she's not home in there just because she has this illness, you can ask her if/when you're overstepping your bounds, leaning in too close for her comfort. She'll likely let you know.
The disability thing. A horror show, that can really be a horror show. If she's trying to do this without representation, it's going to be a long slog. There are attorneys that specialize in representing people, they take a percentage -- I think 25% -- of the money that's owed to your friend. There are also non-profits who do pretty much the same thing and for the same money, or at least there are here in Texas -- a friend of mine went that route, as the attorneys he met with felt tacky, like ambulance chasers. That said, I'm quite sure that there are great attorneys out there, too. You can perhaps research some of this online, make a few phone calls.
Let her know that many people get shot down on their first time through this process, and many get shot down on their second, too -- it seems that they make it difficult to see if you're serious or not, or something. Probably there are people here who can tell us why it's done that way; regardless why, it *is* done that way. And if she gets shot down three times, she'll have to wait a certain amount of time and then start the whole process again, fill out all the forms, cross all the t's and dot all the i's and play their silly games.
You are a great friend, she's lucky she has you in her life; right now, today, there are just whole lots of people walking through their difficulties totally alone. She isn't. Continue to be the friend you are, ask her what she'd want, honor her wishes.
And welcome to being a bit older, and seeing your friends have these sorts of troubles; I've a brother getting hammered by both Parkinson's AND lung cancer, I've a friend who's almost to the place where he'll have to be into a motorized wheelchair and he might not even be able to do that, he has almost not motor skills any longer, much less fine motor skills. Ataxia. In the past year he's lost the capability to drive, he hasn't been able to work for years now, his world getting smaller and smaller. Hurts to see this guy go through this, he's a good guy, he didn't do anything wrong, life can be such a bitch. My brother ... He was absolutely vital, stronger in many ways than any of the rest of us, he never had the depression some of the rest of us have staggered under, but he's melting now, this shit is literally eating him alive. I decided immediately upon hearing of his troubles that I was *not* going to treat him any differently, I still call him a fucking scroto, remind him he's a big fat fucking jagoff, tell him that yeah, he's all sick and stuff now but he's always been a wreck anyways, blah blah blah, etc and etc. No one wants the kid glove thing, no one that I've run into anyways, and we have lots of fun behind this shuckin' and jiving that we've always done, no one important in my life treats me different behind this whole manic depression thing I've got going and if they do I tell them quick to knock it off, that I'm still in here, and don't be a dick. Yeah, all this stuff is truly serious, that's why you gotta be the same as always, have some fun, get your friend to chuckling, good medicine.
posted by dancestoblue at 2:31 PM on January 18, 2011
Be the friend you have always been. It's not like she's not able to understand, it's not like she's not home in there just because she has this illness, you can ask her if/when you're overstepping your bounds, leaning in too close for her comfort. She'll likely let you know.
The disability thing. A horror show, that can really be a horror show. If she's trying to do this without representation, it's going to be a long slog. There are attorneys that specialize in representing people, they take a percentage -- I think 25% -- of the money that's owed to your friend. There are also non-profits who do pretty much the same thing and for the same money, or at least there are here in Texas -- a friend of mine went that route, as the attorneys he met with felt tacky, like ambulance chasers. That said, I'm quite sure that there are great attorneys out there, too. You can perhaps research some of this online, make a few phone calls.
Let her know that many people get shot down on their first time through this process, and many get shot down on their second, too -- it seems that they make it difficult to see if you're serious or not, or something. Probably there are people here who can tell us why it's done that way; regardless why, it *is* done that way. And if she gets shot down three times, she'll have to wait a certain amount of time and then start the whole process again, fill out all the forms, cross all the t's and dot all the i's and play their silly games.
You are a great friend, she's lucky she has you in her life; right now, today, there are just whole lots of people walking through their difficulties totally alone. She isn't. Continue to be the friend you are, ask her what she'd want, honor her wishes.
And welcome to being a bit older, and seeing your friends have these sorts of troubles; I've a brother getting hammered by both Parkinson's AND lung cancer, I've a friend who's almost to the place where he'll have to be into a motorized wheelchair and he might not even be able to do that, he has almost not motor skills any longer, much less fine motor skills. Ataxia. In the past year he's lost the capability to drive, he hasn't been able to work for years now, his world getting smaller and smaller. Hurts to see this guy go through this, he's a good guy, he didn't do anything wrong, life can be such a bitch. My brother ... He was absolutely vital, stronger in many ways than any of the rest of us, he never had the depression some of the rest of us have staggered under, but he's melting now, this shit is literally eating him alive. I decided immediately upon hearing of his troubles that I was *not* going to treat him any differently, I still call him a fucking scroto, remind him he's a big fat fucking jagoff, tell him that yeah, he's all sick and stuff now but he's always been a wreck anyways, blah blah blah, etc and etc. No one wants the kid glove thing, no one that I've run into anyways, and we have lots of fun behind this shuckin' and jiving that we've always done, no one important in my life treats me different behind this whole manic depression thing I've got going and if they do I tell them quick to knock it off, that I'm still in here, and don't be a dick. Yeah, all this stuff is truly serious, that's why you gotta be the same as always, have some fun, get your friend to chuckling, good medicine.
posted by dancestoblue at 2:31 PM on January 18, 2011
The research for my masters thesis is done with people who have degenerative medical conditions.
When we are growing up "nomally" we are surrounded by peers. We know what is normal, what is exception and what is bad by having people to relate that to, be they classmates or an older sibling. But when someone gets ill or "disabled" (I'm going to use that word for convenience from here on) they have very little to compare it to. If you're disabled among non-disabled people, you don't have much reference about how to do stuff, or what you might expect of yourself, or other people of you.
My long-term suggestion is that your friend find other people with MS, or other disabilities, to socialize with, or do an activity with. They'll know and have contacts for how the disability claim; they'll have little tricks or clever plans/references/etc for day to day living with catheters/wheelchairs/losing vision; they'll have the ideas about and strategies for how someone leads a full life with a disability. You say you contacted the local MS group for a therapist; but maybe it would be a lot more useful to contact them for your friend to have someone to talk to locally. Your friend needs to find new ways of living her life; having people who have gone through some of the same stuff will help her do this.
There's also plenty of stuff on the Internet. Maybe one thing you could do is look at disability +/- MS-related blogs to see what people are doing. (Memail me if you want links, or have other questions.) I agree above that sending "miracle cure" stuff is completely unnecessary, but maybe stuff people have blogged about would be more helpful.
That was the long-term suggestion. In the short-term, I don't really know. You say you don't feel that it's the moment to give a speech (these things wouldn't necessarily come through a speech, but through living things together with other people, and perhaps you're not the one to show her these things). I can well imagine someone reacting badly to suggestions that they have to learn to live their lives differently, especially coming straight on the back of devastating news. But maybe if you started reading about / getting to know experiences of other people w/disabilities or MS then you can gradually exchange ideas about what she's going thru and what you've read: in which case maybe you could be the friend with whom she discovers her new body.
Warning: online, and in real-life, groups of disabled people sometimes form around political militancy. Some of these spaces aren't that safe, and some reject non-disabled people's viewpoints quite strongly. It's all about finding a group suitable to one's own personality, etc: for some people the militancy is wonderful; for me, it's very offputting
posted by squishles at 3:05 PM on January 18, 2011
When we are growing up "nomally" we are surrounded by peers. We know what is normal, what is exception and what is bad by having people to relate that to, be they classmates or an older sibling. But when someone gets ill or "disabled" (I'm going to use that word for convenience from here on) they have very little to compare it to. If you're disabled among non-disabled people, you don't have much reference about how to do stuff, or what you might expect of yourself, or other people of you.
My long-term suggestion is that your friend find other people with MS, or other disabilities, to socialize with, or do an activity with. They'll know and have contacts for how the disability claim; they'll have little tricks or clever plans/references/etc for day to day living with catheters/wheelchairs/losing vision; they'll have the ideas about and strategies for how someone leads a full life with a disability. You say you contacted the local MS group for a therapist; but maybe it would be a lot more useful to contact them for your friend to have someone to talk to locally. Your friend needs to find new ways of living her life; having people who have gone through some of the same stuff will help her do this.
There's also plenty of stuff on the Internet. Maybe one thing you could do is look at disability +/- MS-related blogs to see what people are doing. (Memail me if you want links, or have other questions.) I agree above that sending "miracle cure" stuff is completely unnecessary, but maybe stuff people have blogged about would be more helpful.
That was the long-term suggestion. In the short-term, I don't really know. You say you don't feel that it's the moment to give a speech (these things wouldn't necessarily come through a speech, but through living things together with other people, and perhaps you're not the one to show her these things). I can well imagine someone reacting badly to suggestions that they have to learn to live their lives differently, especially coming straight on the back of devastating news. But maybe if you started reading about / getting to know experiences of other people w/disabilities or MS then you can gradually exchange ideas about what she's going thru and what you've read: in which case maybe you could be the friend with whom she discovers her new body.
Warning: online, and in real-life, groups of disabled people sometimes form around political militancy. Some of these spaces aren't that safe, and some reject non-disabled people's viewpoints quite strongly. It's all about finding a group suitable to one's own personality, etc: for some people the militancy is wonderful; for me, it's very offputting
posted by squishles at 3:05 PM on January 18, 2011
MS-friendly therapists are a big step, but I can't stress enough how much a good visual rehabilitation program might come in handy for her. The MS guys can get her through the emotional impact, and the visual rehab guys can teach her how to maximize her use of the sight she'll have going down the road. If she has a local center for the partially sighted or a hospital with a solid ophthalmology department, they can point her in the right direction to receive services.
(The ADEM-to-MS thing is rough. I have a friend in the same boat; he weathered the initial attack with less disability, but his condition is still up for debate longterm.)
posted by fairytale of los angeles at 4:03 PM on January 18, 2011
(The ADEM-to-MS thing is rough. I have a friend in the same boat; he weathered the initial attack with less disability, but his condition is still up for debate longterm.)
posted by fairytale of los angeles at 4:03 PM on January 18, 2011
My best friend from college has MS. I would encourage you to just continue what you've been doing all along: be her friend. Listen when she wants to talk. Don't give her platitudes. Help out where and how you can. That's all anyone (should) want in a friend.
She's going to bring up different issues than your able-bodied friends, but that's just it: they're different issues. Yes, they're "heavier", but everyone has stuff that they're dealing with. The best anyone can do as a friend is to be there to listen to whatever the other person is needing to share.
Sounds to me like you already know what you're doing :)
posted by wwartorff at 4:54 PM on January 18, 2011
She's going to bring up different issues than your able-bodied friends, but that's just it: they're different issues. Yes, they're "heavier", but everyone has stuff that they're dealing with. The best anyone can do as a friend is to be there to listen to whatever the other person is needing to share.
Sounds to me like you already know what you're doing :)
posted by wwartorff at 4:54 PM on January 18, 2011
My college roommate has MS. Similar to you, I'm a couple of continents and and an ocean or two away, so there isn't a lot I can do, practically. It seems, though, that just being available, emotionally, has been a helpful thing over the past ten years.
posted by bardophile at 2:30 AM on January 19, 2011
posted by bardophile at 2:30 AM on January 19, 2011
This thread is closed to new comments.
One thing that my friends & family do is that they send me links or newspaper cuttings of every 'miracle cure for MS' that appears in the media. Unfortunately the media are obsessed with these 'cures' but they're never relevant.
This is a problem for me in two ways. 1) These miracle cures are always snake oil/old news to anyone who keeps themselves informed on the disease. 2) It feels a bit like someone giving you the actual cure and wondering why you aren't dancing about 15 minutes later.
I understand what motivates people to pass these links/cuttings on, and I know it comes from kindness, but it's still annoying. It actually feels sometimes that it's trivialising something (MS) that has massive repercussions on almost every part of a sufferers life 24/7.
For real research and news a place that I check occasionally is the UK MS Society research page.
For me I don't particularly need to talk about my disabilities with friends/family, so it's nice to just talk about normal everyday things rather than 'how is your health?' every time.
posted by selton at 1:30 PM on January 18, 2011