Edit: I did some further researching. Improvements in medical practice has led to immensely increased survival rates for the disease, up from 55% (10 years survival rate) in 1986 to 98% in 1998. That rate fluctuates depending on complicating factors, but it sure beats the 55% that I was originally finding everywhere. So my initial understanding was considerably more morbid than the reality. Sorry about that guys, and thanks for the responses. I've edited the title to reflect the changed nature of my situation. I'm still happy for any advice on how to make things easier for my friend if you have any suggestions on how I can help my friend out.
So a year ago, my best friend from college started complaining about a persistent earache. After going to the doctor several times she commented that it still hadn't gone away after what amounted to almost six months. Summer passed and I just recently asked her how it was doing.
Apparently the doctors think that she's suffering from a condition called Relapsing polychondritis, an infection of the immune system that leads it to eat away at the body's cartilage. It generally starts in the ear and is just painful, but if it spreads to areas like the windpipe or lungs the disease is potentially fatal.
I honestly don't want my friend to dwell on that, but I'm honestly a little scared. If the disease has no actual cure, and the mortality rate increases over time. How do I help myself and my friend not dwell on this when the potential consequences are so dire, and for her at least, the impact is so frequently felt?
All I can say is that I would help her find a way to enjoy what time she has. Most of that is going to come from treatment of the actual symptoms; I can't imagine that pain is easy to deal with. Outside of that, of course, I'd just help her move on to the acceptance part that there's nothing to be done and she may as well enjoy what time she has.
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"[Screw] you and the green you ramped in on." - My EDH battle cry. If I had one. Which I don't.
All I can say is that I would help her find a way to enjoy what time she has. Most of that is going to come from treatment of the actual symptoms; I can't imagine that pain is easy to deal with. Outside of that, of course, I'd just help her move on to the acceptance part that there's nothing to be done and she may as well enjoy what time she has.
Would you say talking about it would be better or worse? I don't want to bring it up if it's just going to make her depressed/sad, but I don't want her to just be suffering alone (I don't know if she's brought it up with any of our other friends)
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Would you say talking about it would be better or worse? I don't want to bring it up if it's just going to make her depressed/sad, but I don't want her to just be suffering alone (I don't know if she's brought it up with any of our other friends)
How she reacts to you bringing it up is going to depend way too much on her personality for me to make a call.
That said, I'm of the opinion that this disease is a reality and that she needs to face it. Avoiding it or ignoring it doesn't make it any less real. If it makes her depressed to talk about it now, that's still a step that needs to be taken on the road to acceptance and eventual happiness.
I'd say bring it up. Understand that it might not be comfortable or easy, but that it needs to be done. Just be delicate.
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"[Screw] you and the green you ramped in on." - My EDH battle cry. If I had one. Which I don't.
How she reacts to you bringing it up is going to depend way too much on her personality for me to make a call.
That said, I'm of the opinion that this disease is a reality and that she needs to face it. Avoiding it or ignoring it doesn't make it any less real. If it makes her depressed to talk about it now, that's still a step that needs to be taken on the road to acceptance and eventual happiness.
I'd say bring it up. Understand that it might not be comfortable or easy, but that it needs to be done. Just be delicate.
Dunno if you saw the edits i made to the original post, but from what I've been seeing, the general prognosis of the disease has improved a lot over the past several decades, so the risk of actual death is now considerably lower. Would bringing this up to her be a good call, or would that come off as making light of her predicament?
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Dunno if you saw the edits i made to the original post, but from what I've been seeing, the general prognosis of the disease has improved a lot over the past several decades, so the risk of actual death is now considerably lower. Would bringing this up to her be a good call, or would that come off as making light of her predicament?
Missed the edits. Ok, scratch practically everything I said so far. The disease is still a reality, but if death isn't certain then she's in the same boat as the rest of us and chances are something else will kill her first. Hell, my father in law just died of heart failure. Healthy diet, exercised, only 56 years old... his heart just quit.
In light of all the new info, I'd say to avoid the topic unless she brings it up. It's simply not an issue. Maybe if you see her wince in pain, then you can bring it up and see if she wants to talk about it.
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"[Screw] you and the green you ramped in on." - My EDH battle cry. If I had one. Which I don't.
Missed the edits. Ok, scratch practically everything I said so far. The disease is still a reality, but if death isn't certain then she's in the same boat as the rest of us and chances are something else will kill her first. Hell, my father in law just died of heart failure. Healthy diet, exercised, only 56 years old... his heart just quit.
In light of all the new info, I'd say to avoid the topic unless she brings it up. It's simply not an issue. Maybe if you see her wince in pain, then you can bring it up and see if she wants to talk about it.
Ok, understood. When I first did research I was reading that the mortality rate at 5 years was 30% which seemed very very high. All the more recent articles I've been reading though (recent as in publishing date) set it much much lower, and generally as a result of disease related complications.
I'll hold off on mentioning it then. If she brings it up though I do think I will try to reassure her that the threat of her dying isn't as high as she probably thinks. She can be a bit morbid at times so that would probably make her feel a little better.
We shouldn't and can't gauge the situation between you and your friend, and you will have to do all of the heavy lifting. However, safe to say that you should play it conservatively and tread lightly.
If she makes this known and brings this up, do whatever you can to give her a decent quality of life and dignity. Be careful when doing this, as you don't want to come across as patronising, paternalistic, or plainly controlling.
If she needs someone to hear her talk, console her, encourage her, etc., do that.
Ok, understood. When I first did research I was reading that the mortality rate at 5 years was 30% which seemed very very high. All the more recent articles I've been reading though (recent as in publishing date) set it much much lower, and generally as a result of disease related complications.
What recent articles have you been reading? (Can you access full articles?)
Being a rare disease, it's generally easier to keep up on the literature.
Unless there's novel studies, the 5-y. survival rate is now in the ball park of 60 to 70%. However, that is from a 10-y.-old review, reviewing a year-old paper, and there have been developments in managing RP, which would increase the survival rate.
By the way, mortality rate refers a numerator of people with the disease per denominator of people in a general population. The term you should be using is actually survival rate.
If your friend brings up dying, her dying isn't a 'threat'. It is a certainty, as it is for everyone. Perhaps what is more acceptable is not cold-hard facts from probably underpowered studies that draw spurious conclusions but simply listening. Further to that, it could be, but isn't necessarily, okay to ask in an appropriate manner whether the patient she would like to talk (e.g., about it or anything); to clearly state that you are here, supporting her (if you're buddies like that and saying this wouldn't be creepy); to say that she's a fighter and will get through this.
There's a very thin line to walk. You must not provide no emotional support whatsoever or bombard people with ultimately meaningless stats or info (whether you do, in fact, die in 5 or 10 years is yes or no, and not a discrete probability between 0% and 100%). You also must not provide too much or 'incorrect' support, such as in the form of false hope (e.g., via analogies or anecdotes, such as previous patients' histories or the clinical behavior in those people, which is related to stats or info; unrealistic wishes, such as that things will be all right immediately or if at all).
In any case, unless I'm terribly mistaken, you're not a doctor and you're not her doctor. So, while you can inform yourself as much as you want, don't worry about the stats or let it get to you!
All I can say is that I would help her find a way to enjoy what time she has. Most of that is going to come from treatment of the actual symptoms; I can't imagine that pain is easy to deal with. Outside of that, of course, I'd just help her move on to the acceptance part that there's nothing to be done and she may as well enjoy what time she has.
This is quite crucial. It is, presumably, the crux of your thread.
You may be aware, perhaps via pop psych or something, of things such as 'healthy body in healthy mind', Dr. Kübler-Ross' model of the stages of grief or of Zisook's components of grief, or the mind being part of the battle when facing a condition such as cancer or, indeed, RP.
Bearing that in mind, you could not only be there but:
be proactive about lifting her spirits,
seeing that she is treated well by attending appointments,
has bisphosphonates, steroids, or whatever doctors prescribe by driving her to the pharmacist, and/or
complies with the regimen in a non-pushy, -preachy manner.
9909: Thank you very much. You make a lot of good points, particularly about not bringing up statistics and focusing more on offering support.
It's actually sort of funny you bring up the death is a certainty part, because this actually came up fairly frequently as a joke back before she learn about this. I think she'll understand that well.
To be clear, this friend has been diagnosed and you are trying to find ways of comforting her or helping her deal with it, correct?
She couldn't remember at the time bringing it up what the name of the condition was, only that it involved an infection of the immune system that ate away at cartilage and was life threatening if it progressed to the lungs or trachea. From that, this was effectively the only thing that came up, so I'm assuming this is what she was referring to.
But yes, she has seen a doctor, gotten a diagnosis. I am just trying to know what the best way to help both her and me have a better peace of mind about it.
I think what also bothers us both a bit is that we're both just college students at the moment, which is really considerably earlier than most people expect to learn that they have a medical problem.
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She couldn't remember at the time bringing it up what the name of the condition was, only that it involved an infection of the immune system that ate away at cartilage and was life threatening if it progressed to the lungs or trachea. From that, this was effectively the only thing that came up, so I'm assuming this is what she was referring to.
But yes, she has seen a doctor, gotten a diagnosis. I am just trying to know what the best way to help both her and me have a better peace of mind about it.
I think what also bothers us both a bit is that we're both just college students at the moment, which is really considerably earlier than most people expect to learn that they have a medical problem.
Treat her like a person- She isn't made of glass, and being treated 'special' because of this will only hurt her further. For instance, don't exclude her from anything because of this ('Oh, we didn't think you'd want to go because X'). Likewise, don't make special plans 'just for her' because of this.
When I was stuck in a wheelchair for six months, this is what bothered me most. People have a bad habit of treating the ill and injured differently in social situations and it can hurt almost as much as the disease.
If she brings it up, listen to her concerns and make sure the conversation revolves around her problems, her needs and her concerns, and just be a good listener.
I'd also recommend speaking with a therapist or someone on how to speak about serious diseases like this.
9909: Thank you very much. You make a lot of good points, particularly about not bringing up statistics and focusing more on offering support.
Not at all. Least I could do.
It's actually sort of funny you bring up the death is a certainty part, because this actually came up fairly frequently as a joke back before she learn about this. I think she'll understand that well.
Patients joke about it.
Less-than-professional colleagues (who aren't pathologists, radiologists, or other specialists who have not that much need for bedside manner) have also joked about this too.
From experience and what's been taught (and successfully absorbed and retained), if a person is indeed dying (by which I mean 99.8% probability of death) sorry, very tired and not very lucid), humour is a means of coping or, at least, the potential downsides do not outweigh the upsides. However, if a person is not dying (dying slowly or may not necessarily die), it can be quite unhealthy and be a defence.
She couldn't remember at the time bringing it up what the name of the condition was, only that it involved an infection of the immune system that ate away at cartilage and was life threatening if it progressed to the lungs or trachea. From that, this was effectively the only thing that came up, so I'm assuming this is what she was referring to.
I could fire off a list of diseases and entities that fit this description; RP isn't the only thing that fits the bill.
But yes, she has seen a doctor, gotten a diagnosis. I am just trying to know what the best way to help both her and me have a better peace of mind about it.
Pardon my questioning, particularly with regard to this, but what is your intent in helping her? Why do you want to help her apparently so much? What's your relationship? Where are the lines?
How important is your peace of mind? What of it relative to other priorities here? Which (countervailing) priorities or interests can you identify?
Quote from Jay »
I'd also recommend speaking with a therapist or someone on how to speak about serious diseases like this.
I second this.
Some people find religious counsel are utile, as are legal counsel, so as to sort of their will. Some patients, though not terminal, are shaken up by these things and ask for ministers of religion or lawyers, so that they will have some piece of mind for the future and so that they are keeping active or at least doing something.
Oh, the other things seem to have been mentioned but are also key.
I appreciate that Jay has stressed the don't smother or mollycoddle your friend, as mentioned above, thing. Unless they make it remotely clear, don't treat them any differently than you normally would, though be a little more considerate and thoughtful!
I could fire off a list of diseases and entities that fit this description; RP isn't the only thing that fits the bill.
Ok. In that case, I probably will stop looking into that condition too deeply.
Quote from "9909" »
Pardon my questioning, particularly with regard to this, but what is your intent in helping her? Why do you want to help her apparently so much? What's your relationship? Where are the lines?
How important is your peace of mind? What of it relative to other priorities here? Which (countervailing) priorities or interests can you identify?
I'm not sure exactly how to answer this correctly, but she was the first friend I made in college and remains my closest friend. We've never dated, but we hang out very very frequently. It was through her that I've met most of my current friends at college and she's still something of the hub of the group. She's been with me in many of my classes and has helped me immensely with schoolwork, meeting new people, and just generally being a great friend.
As for how important is my peace of mind...not really sure. I'm normally the optimist who helps other people look past challenges, telling them to keep pushing on, that everything will turn out alright, etc. When I was in high school, my parents were unemployed and I was always the one trying to keep everyone's spirits up, pointing out that this wouldn't last forever, that we'd all be okay, that this wasn't the end of the world, etc. It was very painful to watch my parents despair, and I can't remember anything more rewarding than encouraging them that we could make it through.
I'm not sure I can say that for this though, because unlike unemployment, relationship difficulties, and other such problems, medical problems have a bit harder of a consequence. It's also a bit trickier to tell someone who is barely out of high school that everything will be all right if they feel there's a real risk of them dying in the seemingly near future. I want to be able to provide comfort and hope, but if I doubt that the encouragement I'm providing is honest, then I'm worried that I won't be able to be convince her to not worry. I always feel obligated to help when things are going badly for someone and I'm scared that I won't be able to if I can't convince myself that things will turn out alright.
So I met up with her and another of our close friends for dinner. She and the other friend had just came back from the pharmacy and she was in a crumby mood because her medicine wasn't in. We basically tried to cheer her up, highlighting that she shouldn't worry about this. Just stick to what you can actually do to combat the illness, and understand that the rest is out of your power. We then did our best to cheer her up and make her laugh, and by the end of dinner she seemed more cheerful.
Later on when it was just the two of us, I did the same thing again. I highlighted that there are parts of this that she controls (taking her medicine, seeing the doctor, etc) and should do that. The rest she can't change, so don't worry. Her condition is painful atm, but not life threatening in the slightest. She's on medication, there's no use worrying about the what-ifs until they happen. She seemed visibly more at ease after that and I think that it helped.
Was this sort of what you guys were suggesting? Is this the proper stance to continue to take?
Later on when it was just the two of us, I did the same thing again. I highlighted that there are parts of this that she controls (taking her medicine, seeing the doctor, etc) and should do that. The rest she can't change, so don't worry. Her condition is painful atm, but not life threatening in the slightest. She's on medication, there's no use worrying about the what-ifs until they happen. She seemed visibly more at ease after that and I think that it helped.
Was this sort of what you guys were suggesting? Is this the proper stance to continue to take?
I have to get to back to work, but the short answer to this is that it could be a good outlook or thing to have done.
Some people, perhaps more pragmatic people, function better knowing that there's only so much that they can do. Other people can be a hot mess, though.
The only thing that I should caution you about is to tactfully underscore the things that she can take charge of and feel secure about, such as making appointments, complying with treatment regimen, eating well, keeping busy, and persisting as she normally would.
I skimmed over the answers to my questions, but it sounds like you're rather sweet.
Auto-immune diseases like this unfortunately have no permanent cure, but with proper medication the symptoms tend to subside improving the life quality of the patients.
It's being worked on.
Permanent cure is a bit of a strange thing to say, though. It's not as though other diseases have permanent cures, or that the term or concept is used in reference to other diseases.
I don't know if I can answer that for her, but I like to think that she sees me as a good friend. Beyond that (or if I'm overselling myself), I can't say
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You were her friend before this diagnosis, and you clearly care about her.
So your work's been done for you. Just continue to be her friend and continue to care about her. You don't need to do anything you weren't already doing. Just respond to her. Any answers you seek will be found in her, not in thinking about what might happen.
I honestly don't want my friend to dwell on that, but I'm honestly a little scared. If the disease has no actual cure, and the mortality rate increases over time. How do I help myself and my friend not dwell on this when the potential consequences are so dire, and for her at least, the impact is so frequently felt?
The last sentence is worded in an interesting way. "Myself and my friend not dwell on this."
My question is whether your friend is the one who really needs our help in dealing with her diagnosis. Oh, I know you came here for advice on how to help your friend, and that's very thoughtful. But it seems like this thread is more about your need for help in dealing with her medical diagnosis. Which is ok. Just please clarify if this is accurate.
I'm not sure exactly how to answer this correctly, but she was the first friend I made in college and remains my closest friend. We've never dated, but we hang out very very frequently. It was through her that I've met most of my current friends at college and she's still something of the hub of the group. She's been with me in many of my classes and has helped me immensely with schoolwork, meeting new people, and just generally being a great friend.
As for how important is my peace of mind...not really sure. I'm normally the optimist who helps other people look past challenges, telling them to keep pushing on, that everything will turn out alright, etc. When I was in high school, my parents were unemployed and I was always the one trying to keep everyone's spirits up, pointing out that this wouldn't last forever, that we'd all be okay, that this wasn't the end of the world, etc. It was very painful to watch my parents despair, and I can't remember anything more rewarding than encouraging them that we could make it through.
I'm not sure I can say that for this though, because unlike unemployment, relationship difficulties, and other such problems, medical problems have a bit harder of a consequence. It's also a bit trickier to tell someone who is barely out of high school that everything will be all right if they feel there's a real risk of them dying in the seemingly near future. I want to be able to provide comfort and hope, but if I doubt that the encouragement I'm providing is honest, then I'm worried that I won't be able to be convince her to not worry. I always feel obligated to help when things are going badly for someone and I'm scared that I won't be able to if I can't convince myself that things will turn out alright.
Does that make sense?
It makes perfect sense.
Unfortunately, it's not a healthy mindset to be in. You're saying you're a person who needs to fix other people's problems in order to not feel like you've failed them.
What that means is you're dependent on other people to give you a feeling of self worth.
Read through your posts again and pay attention to what you've chosen to write. The thing I'm seeing is there's a lot of personal pronouns. Your posts don't really deal so much with her and how she's reacting to all of this. They mostly deal with the question of "What do I do?" Look at how much importance you're placing on yourself and your actions. It really sounds like you're saying, "Oh, I'm sorry that you might be upset you have a life-threatening condition, your sadness is something I will blame myself for."
No, that's absurd and self-indulgent. It's one thing to want to help someone, but a person's well-being is his or her own responsibility, and it seems like in your quest to assume responsibility for taking care of others, you're neglecting yourself.
I always feel obligated to help when things are going badly for someone and I'm scared that I won't be able to if I can't convince myself that things will turn out alright.
Is that it? Or is it the other way around: you're scared that things won't turn out alright if you're unable to help that person?
Recognize that this is not about you. This is about her. It's her diagnosis. It's her burden to bear. You can't carry it for her. You can't cure her. You cannot fix her. You cannot fix this situation.
This does not invalidate your worth as a human being. Indeed, it demonstrates that you are just that: a human being, with all the limitations and imperfections a human being has. That's ok.
You were her friend before this diagnosis, and you clearly care about her.
So your work's been done for you. Just continue to be her friend and continue to care about her. You don't need to do anything you weren't already doing. Just respond to her. Any answers you seek will be found in her, not in thinking about what might happen.
Thank you and things have calmed down considerably. It's become apparent now that everyone in our group of friends is aware of the situation, and everyone has been very supportive and calm about the whole thing (which did a lot to help take my mind off it as well). Everyone has more or less taken the attitude that so long as she does what she can, she needn't worry about what she can't control, and I think we've all taken it to heart.
Quote from "Highroller" »
The last sentence is worded in an interesting way. "Myself and my friend not dwell on this."
My question is whether your friend is the one who really needs our help in dealing with her diagnosis. Oh, I know you came here for advice on how to help your friend, and that's very thoughtful. But it seems like this thread is more about your need for help in dealing with her medical diagnosis. Which is ok. Just please clarify if this is accurate.
This is accurate. When my friend told me about it, I honestly got very scared. The only people in my life who've ever died are family members who, while I loved them dearly, tended to not be super present in my day to day life. The idea that I might lose someone who has been pretty much omnipresent in my life isn't something I've really had to face yet, and I really didn't know how to stop thinking about it. To be fair, I really was looking for ways to also help keep my friend positive (she had been in a rather dark mood), but I admit that I was also looking for a lot more personal advice than I let on in the OP (I'll edit it in the morning for clarity).
The myself and my friend comment though was honestly just me failing at grammar. Pronouns and I seem to have this confused relationship or something >.<
Edit:
Quote from "Highroller" »
No, that's absurd and self-indulgent. It's one thing to want to help someone, but a person's well-being is his or her own responsibility, and it seems like in your quest to assume responsibility for taking care of others, you're neglecting yourself.
To be fair, that was part of the reason I came asking for advice about how to avoid dwelling on this. I know it's not something that I can really do much about, but it was still bothering me a lot.
Just to make things clear, and I don't doubt that you're qualified as a human, presumable with some life experience and prudence, but what are your credentials?
Thank you and things have calmed down considerably. It's become apparent now that everyone in our group of friends is aware of the situation, and everyone has been very supportive and calm about the whole thing (which did a lot to help take my mind off it as well). Everyone has more or less taken the attitude that so long as she does what she can, she needn't worry about what she can't control, and I think we've all taken it to heart.
Good to hear that, I suppose.
Just as an aside, why does your profile state that you're a "Resident optimist, thinker, and psychiatrist"? So... wait, you're a medico too? If you clarify that, that would be great, cheers.
Just as an aside, why does your profile state that you're a "Resident optimist, thinker, and psychiatrist"? So... wait, you're a medico too? If you clarify that, that would be great, cheers.
No, that's an old joke from when my dad was unemployed. Whenever my mom was feeling depressed I would always be able to cheer her up, listen to her vent, offer positive encouragement and truisms. It happened frequently enough that she started joking that I was the family psychiatrist. I also threw it up there since my friends come to me a lot for advice, though I make a point to tell them to get professional help if it's anything more than a relationship problem.
To be clear, I do not try to pass myself off as one intentionally. I will gladly remove that from my profile if you think it's misleading/gives the wrong impression. That wasn't my intent at all.
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Edit: I did some further researching. Improvements in medical practice has led to immensely increased survival rates for the disease, up from 55% (10 years survival rate) in 1986 to 98% in 1998. That rate fluctuates depending on complicating factors, but it sure beats the 55% that I was originally finding everywhere. So my initial understanding was considerably more morbid than the reality. Sorry about that guys, and thanks for the responses. I've edited the title to reflect the changed nature of my situation. I'm still happy for any advice on how to make things easier for my friend if you have any suggestions on how I can help my friend out.
So a year ago, my best friend from college started complaining about a persistent earache. After going to the doctor several times she commented that it still hadn't gone away after what amounted to almost six months. Summer passed and I just recently asked her how it was doing.
Apparently the doctors think that she's suffering from a condition called Relapsing polychondritis, an infection of the immune system that leads it to eat away at the body's cartilage. It generally starts in the ear and is just painful, but if it spreads to areas like the windpipe or lungs the disease is potentially fatal.
I honestly don't want my friend to dwell on that, but I'm honestly a little scared. If the disease has no actual cure, and the mortality rate increases over time. How do I help myself and my friend not dwell on this when the potential consequences are so dire, and for her at least, the impact is so frequently felt?
Just be her friend and show her you care. When my friend was diagnosed with lymphoma, I didn't treat her any differently - and she appreciated that I was still there for her as a great friend.
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1. Unless you're a licensed healthcare provider, it isn't your responsibility to discuss the prognosis with your friend.
2. Like what everyone said, the only thing you can do is be a supportive friend. Therapy for anxiety/depression and pain management might be good for your friend. I'm only a nursing student so I can only speak from what I'm learning at school, but nonetheless it sounds like professional help is needed. You can always go to a school counselor for advice? It's great to go to mtgsalvation for moral support, but there's only so much we can say to help you out
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So a year ago, my best friend from college started complaining about a persistent earache. After going to the doctor several times she commented that it still hadn't gone away after what amounted to almost six months. Summer passed and I just recently asked her how it was doing.
Apparently the doctors think that she's suffering from a condition called Relapsing polychondritis, an infection of the immune system that leads it to eat away at the body's cartilage. It generally starts in the ear and is just painful, but if it spreads to areas like the windpipe or lungs the disease is potentially fatal.
I honestly don't want my friend to dwell on that, but I'm honestly a little scared. If the disease has no actual cure, and the mortality rate increases over time. How do I help myself and my friend not dwell on this when the potential consequences are so dire, and for her at least, the impact is so frequently felt?
Pristaxcontrombmodruu!
Would you say talking about it would be better or worse? I don't want to bring it up if it's just going to make her depressed/sad, but I don't want her to just be suffering alone (I don't know if she's brought it up with any of our other friends)
How she reacts to you bringing it up is going to depend way too much on her personality for me to make a call.
That said, I'm of the opinion that this disease is a reality and that she needs to face it. Avoiding it or ignoring it doesn't make it any less real. If it makes her depressed to talk about it now, that's still a step that needs to be taken on the road to acceptance and eventual happiness.
I'd say bring it up. Understand that it might not be comfortable or easy, but that it needs to be done. Just be delicate.
Pristaxcontrombmodruu!
Dunno if you saw the edits i made to the original post, but from what I've been seeing, the general prognosis of the disease has improved a lot over the past several decades, so the risk of actual death is now considerably lower. Would bringing this up to her be a good call, or would that come off as making light of her predicament?
Missed the edits. Ok, scratch practically everything I said so far. The disease is still a reality, but if death isn't certain then she's in the same boat as the rest of us and chances are something else will kill her first. Hell, my father in law just died of heart failure. Healthy diet, exercised, only 56 years old... his heart just quit.
In light of all the new info, I'd say to avoid the topic unless she brings it up. It's simply not an issue. Maybe if you see her wince in pain, then you can bring it up and see if she wants to talk about it.
Pristaxcontrombmodruu!
Ok, understood. When I first did research I was reading that the mortality rate at 5 years was 30% which seemed very very high. All the more recent articles I've been reading though (recent as in publishing date) set it much much lower, and generally as a result of disease related complications.
I'll hold off on mentioning it then. If she brings it up though I do think I will try to reassure her that the threat of her dying isn't as high as she probably thinks. She can be a bit morbid at times so that would probably make her feel a little better.
If she makes this known and brings this up, do whatever you can to give her a decent quality of life and dignity. Be careful when doing this, as you don't want to come across as patronising, paternalistic, or plainly controlling.
If she needs someone to hear her talk, console her, encourage her, etc., do that.
What recent articles have you been reading? (Can you access full articles?)
Being a rare disease, it's generally easier to keep up on the literature.
Unless there's novel studies, the 5-y. survival rate is now in the ball park of 60 to 70%. However, that is from a 10-y.-old review, reviewing a year-old paper, and there have been developments in managing RP, which would increase the survival rate.
By the way, mortality rate refers a numerator of people with the disease per denominator of people in a general population. The term you should be using is actually survival rate.
If your friend brings up dying, her dying isn't a 'threat'. It is a certainty, as it is for everyone. Perhaps what is more acceptable is not cold-hard facts from probably underpowered studies that draw spurious conclusions but simply listening. Further to that, it could be, but isn't necessarily, okay to ask in an appropriate manner whether
the patientshe would like to talk (e.g., about it or anything); to clearly state that you are here, supporting her (if you're buddies like that and saying this wouldn't be creepy); to say that she's a fighter and will get through this.There's a very thin line to walk. You must not provide no emotional support whatsoever or bombard people with ultimately meaningless stats or info (whether you do, in fact, die in 5 or 10 years is yes or no, and not a discrete probability between 0% and 100%). You also must not provide too much or 'incorrect' support, such as in the form of false hope (e.g., via analogies or anecdotes, such as previous patients' histories or the clinical behavior in those people, which is related to stats or info; unrealistic wishes, such as that things will be all right immediately or if at all).
In any case, unless I'm terribly mistaken, you're not a doctor and you're not her doctor. So, while you can inform yourself as much as you want, don't worry about the stats or let it get to you!
Edit:
This is quite crucial. It is, presumably, the crux of your thread.
You may be aware, perhaps via pop psych or something, of things such as 'healthy body in healthy mind', Dr. Kübler-Ross' model of the stages of grief or of Zisook's components of grief, or the mind being part of the battle when facing a condition such as cancer or, indeed, RP.
Bearing that in mind, you could not only be there but:
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It's actually sort of funny you bring up the death is a certainty part, because this actually came up fairly frequently as a joke back before she learn about this. I think she'll understand that well.
She couldn't remember at the time bringing it up what the name of the condition was, only that it involved an infection of the immune system that ate away at cartilage and was life threatening if it progressed to the lungs or trachea. From that, this was effectively the only thing that came up, so I'm assuming this is what she was referring to.
But yes, she has seen a doctor, gotten a diagnosis. I am just trying to know what the best way to help both her and me have a better peace of mind about it.
I think what also bothers us both a bit is that we're both just college students at the moment, which is really considerably earlier than most people expect to learn that they have a medical problem.
Treat her like a person- She isn't made of glass, and being treated 'special' because of this will only hurt her further. For instance, don't exclude her from anything because of this ('Oh, we didn't think you'd want to go because X'). Likewise, don't make special plans 'just for her' because of this.
When I was stuck in a wheelchair for six months, this is what bothered me most. People have a bad habit of treating the ill and injured differently in social situations and it can hurt almost as much as the disease.
If she brings it up, listen to her concerns and make sure the conversation revolves around her problems, her needs and her concerns, and just be a good listener.
I'd also recommend speaking with a therapist or someone on how to speak about serious diseases like this.
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Patients joke about it.
Less-than-professional colleagues (who aren't pathologists, radiologists, or other specialists who have not that much need for bedside manner) have also joked about this too.
From experience and what's been taught (and successfully absorbed and retained), if a person is indeed dying (by which I mean 99.8% probability of death) sorry, very tired and not very lucid), humour is a means of coping or, at least, the potential downsides do not outweigh the upsides. However, if a person is not dying (dying slowly or may not necessarily die), it can be quite unhealthy and be a defence.
I could fire off a list of diseases and entities that fit this description; RP isn't the only thing that fits the bill.
Pardon my questioning, particularly with regard to this, but what is your intent in helping her? Why do you want to help her apparently so much? What's your relationship? Where are the lines?
How important is your peace of mind? What of it relative to other priorities here? Which (countervailing) priorities or interests can you identify?
I second this.
Some people find religious counsel are utile, as are legal counsel, so as to sort of their will. Some patients, though not terminal, are shaken up by these things and ask for ministers of religion or lawyers, so that they will have some piece of mind for the future and so that they are keeping active or at least doing something.
Oh, the other things seem to have been mentioned but are also key.
I appreciate that Jay has stressed the don't smother or mollycoddle your friend, as mentioned above, thing. Unless they make it remotely clear, don't treat them any differently than you normally would, though be a little more considerate and thoughtful!
Ok. In that case, I probably will stop looking into that condition too deeply.
I'm not sure exactly how to answer this correctly, but she was the first friend I made in college and remains my closest friend. We've never dated, but we hang out very very frequently. It was through her that I've met most of my current friends at college and she's still something of the hub of the group. She's been with me in many of my classes and has helped me immensely with schoolwork, meeting new people, and just generally being a great friend.
As for how important is my peace of mind...not really sure. I'm normally the optimist who helps other people look past challenges, telling them to keep pushing on, that everything will turn out alright, etc. When I was in high school, my parents were unemployed and I was always the one trying to keep everyone's spirits up, pointing out that this wouldn't last forever, that we'd all be okay, that this wasn't the end of the world, etc. It was very painful to watch my parents despair, and I can't remember anything more rewarding than encouraging them that we could make it through.
I'm not sure I can say that for this though, because unlike unemployment, relationship difficulties, and other such problems, medical problems have a bit harder of a consequence. It's also a bit trickier to tell someone who is barely out of high school that everything will be all right if they feel there's a real risk of them dying in the seemingly near future. I want to be able to provide comfort and hope, but if I doubt that the encouragement I'm providing is honest, then I'm worried that I won't be able to be convince her to not worry. I always feel obligated to help when things are going badly for someone and I'm scared that I won't be able to if I can't convince myself that things will turn out alright.
Does that make sense?
Later on when it was just the two of us, I did the same thing again. I highlighted that there are parts of this that she controls (taking her medicine, seeing the doctor, etc) and should do that. The rest she can't change, so don't worry. Her condition is painful atm, but not life threatening in the slightest. She's on medication, there's no use worrying about the what-ifs until they happen. She seemed visibly more at ease after that and I think that it helped.
Was this sort of what you guys were suggesting? Is this the proper stance to continue to take?
I have to get to back to work, but the short answer to this is that it could be a good outlook or thing to have done.
Some people, perhaps more pragmatic people, function better knowing that there's only so much that they can do. Other people can be a hot mess, though.
The only thing that I should caution you about is to tactfully underscore the things that she can take charge of and feel secure about, such as making appointments, complying with treatment regimen, eating well, keeping busy, and persisting as she normally would.
I skimmed over the answers to my questions, but it sounds like you're rather sweet.
One additional question: what do you mean to her?
It's being worked on.
Permanent cure is a bit of a strange thing to say, though. It's not as though other diseases have permanent cures, or that the term or concept is used in reference to other diseases.
I don't know if I can answer that for her, but I like to think that she sees me as a good friend. Beyond that (or if I'm overselling myself), I can't say
You were her friend before this diagnosis, and you clearly care about her.
So your work's been done for you. Just continue to be her friend and continue to care about her. You don't need to do anything you weren't already doing. Just respond to her. Any answers you seek will be found in her, not in thinking about what might happen.
The last sentence is worded in an interesting way. "Myself and my friend not dwell on this."
My question is whether your friend is the one who really needs our help in dealing with her diagnosis. Oh, I know you came here for advice on how to help your friend, and that's very thoughtful. But it seems like this thread is more about your need for help in dealing with her medical diagnosis. Which is ok. Just please clarify if this is accurate.
It makes perfect sense.
Unfortunately, it's not a healthy mindset to be in. You're saying you're a person who needs to fix other people's problems in order to not feel like you've failed them.
What that means is you're dependent on other people to give you a feeling of self worth.
Read through your posts again and pay attention to what you've chosen to write. The thing I'm seeing is there's a lot of personal pronouns. Your posts don't really deal so much with her and how she's reacting to all of this. They mostly deal with the question of "What do I do?" Look at how much importance you're placing on yourself and your actions. It really sounds like you're saying, "Oh, I'm sorry that you might be upset you have a life-threatening condition, your sadness is something I will blame myself for."
No, that's absurd and self-indulgent. It's one thing to want to help someone, but a person's well-being is his or her own responsibility, and it seems like in your quest to assume responsibility for taking care of others, you're neglecting yourself.
Is that it? Or is it the other way around: you're scared that things won't turn out alright if you're unable to help that person?
Recognize that this is not about you. This is about her. It's her diagnosis. It's her burden to bear. You can't carry it for her. You can't cure her. You cannot fix her. You cannot fix this situation.
This does not invalidate your worth as a human being. Indeed, it demonstrates that you are just that: a human being, with all the limitations and imperfections a human being has. That's ok.
Thank you and things have calmed down considerably. It's become apparent now that everyone in our group of friends is aware of the situation, and everyone has been very supportive and calm about the whole thing (which did a lot to help take my mind off it as well). Everyone has more or less taken the attitude that so long as she does what she can, she needn't worry about what she can't control, and I think we've all taken it to heart.
This is accurate. When my friend told me about it, I honestly got very scared. The only people in my life who've ever died are family members who, while I loved them dearly, tended to not be super present in my day to day life. The idea that I might lose someone who has been pretty much omnipresent in my life isn't something I've really had to face yet, and I really didn't know how to stop thinking about it. To be fair, I really was looking for ways to also help keep my friend positive (she had been in a rather dark mood), but I admit that I was also looking for a lot more personal advice than I let on in the OP (I'll edit it in the morning for clarity).
The myself and my friend comment though was honestly just me failing at grammar. Pronouns and I seem to have this confused relationship or something >.<
Edit:
To be fair, that was part of the reason I came asking for advice about how to avoid dwelling on this. I know it's not something that I can really do much about, but it was still bothering me a lot.
Good to hear that, I suppose.
Just as an aside, why does your profile state that you're a "Resident optimist, thinker, and psychiatrist"? So... wait, you're a medico too? If you clarify that, that would be great, cheers.
No, that's an old joke from when my dad was unemployed. Whenever my mom was feeling depressed I would always be able to cheer her up, listen to her vent, offer positive encouragement and truisms. It happened frequently enough that she started joking that I was the family psychiatrist. I also threw it up there since my friends come to me a lot for advice, though I make a point to tell them to get professional help if it's anything more than a relationship problem.
To be clear, I do not try to pass myself off as one intentionally. I will gladly remove that from my profile if you think it's misleading/gives the wrong impression. That wasn't my intent at all.
Just be her friend and show her you care. When my friend was diagnosed with lymphoma, I didn't treat her any differently - and she appreciated that I was still there for her as a great friend.
Simple.
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2. Like what everyone said, the only thing you can do is be a supportive friend. Therapy for anxiety/depression and pain management might be good for your friend. I'm only a nursing student so I can only speak from what I'm learning at school, but nonetheless it sounds like professional help is needed. You can always go to a school counselor for advice? It's great to go to mtgsalvation for moral support, but there's only so much we can say to help you out