Hey illness, please give me my partner back
August 17, 2015 3:18 PM Subscribe
Need help handling growing apart from your partner when chronic illness has eliminated everything you had in common. If the relationship is deteriorating, when and how should you keep it alive?
My partner of 1.5 years has, over the course of our relationship, developed a chronic health condition. He's undiagnosed, but it involves ongoing pain, fatigue, and a few other symptoms that have slowly and persistently ripped away everything that used to bring him joy/fulfillment. He went from being an upbeat, energetic, active, creative individual to not being able to get out of bed for multiple days in a row. Obviously, this is tough.
I’ve stayed with him throughout this time for a couple of reasons. One, I just sort of assumed originally that his health would improve (“he’s in his 20s, it will probably just go away soon!”). Second, the first few months of the relationship were totally awesome, and I wanted more of that, and was willing to wait for it. Third, I’d justifying to myself, “well, at least we still can share _____ together.” However, as his health as worsened one by one these have all disappeared for him (creative hobbies that require too much energy, friend groups that are too difficult/stressful to maintain while sick, exploring the city is too painful, etc.) Currently, most of our time is spent hanging out in the same room while he plays video games and I work on something or read the internet. Sex life is still quite good. I go out with my friends and make sure I keep up my own life, but it makes me sad that he’s not more a part of it. It makes him sad to hear about what’s going on in the normal, healthy world, thus I don’t report much back to him. He doesn't really know what's up in my life, and I hear illness updates but that's about all that's happening in his life.
Without any real medical explanation it took a while for me to really get that this may be permanent. If I ignore how things used to be and think just about what we have today I would say this relationship isn’t fulfilling enough for me and probably hasn’t been for the past 3-5 months. However, I still love him and him being sick/not being able to do a lot of activities with me isn’t a dealbreaker to me in itself, but I want SOMETHING to connect over and I’m seriously running out of ideas here. There are random (relatively) good days and so I have a hard time being like "well, when ____ happens, it will officially be not good enough."
So my questions are to people who have been in relationships with someone chronically ill, how did you know it was time to give up vs. stick with them, and what do you do to stay connected and continue to grow the relationship with your partner while they are sick?
P.S. We have both been in therapy, though it hasn’t been super helpful. Specific styles/technique recommendations welcome, though.
My partner of 1.5 years has, over the course of our relationship, developed a chronic health condition. He's undiagnosed, but it involves ongoing pain, fatigue, and a few other symptoms that have slowly and persistently ripped away everything that used to bring him joy/fulfillment. He went from being an upbeat, energetic, active, creative individual to not being able to get out of bed for multiple days in a row. Obviously, this is tough.
I’ve stayed with him throughout this time for a couple of reasons. One, I just sort of assumed originally that his health would improve (“he’s in his 20s, it will probably just go away soon!”). Second, the first few months of the relationship were totally awesome, and I wanted more of that, and was willing to wait for it. Third, I’d justifying to myself, “well, at least we still can share _____ together.” However, as his health as worsened one by one these have all disappeared for him (creative hobbies that require too much energy, friend groups that are too difficult/stressful to maintain while sick, exploring the city is too painful, etc.) Currently, most of our time is spent hanging out in the same room while he plays video games and I work on something or read the internet. Sex life is still quite good. I go out with my friends and make sure I keep up my own life, but it makes me sad that he’s not more a part of it. It makes him sad to hear about what’s going on in the normal, healthy world, thus I don’t report much back to him. He doesn't really know what's up in my life, and I hear illness updates but that's about all that's happening in his life.
Without any real medical explanation it took a while for me to really get that this may be permanent. If I ignore how things used to be and think just about what we have today I would say this relationship isn’t fulfilling enough for me and probably hasn’t been for the past 3-5 months. However, I still love him and him being sick/not being able to do a lot of activities with me isn’t a dealbreaker to me in itself, but I want SOMETHING to connect over and I’m seriously running out of ideas here. There are random (relatively) good days and so I have a hard time being like "well, when ____ happens, it will officially be not good enough."
So my questions are to people who have been in relationships with someone chronically ill, how did you know it was time to give up vs. stick with them, and what do you do to stay connected and continue to grow the relationship with your partner while they are sick?
P.S. We have both been in therapy, though it hasn’t been super helpful. Specific styles/technique recommendations welcome, though.
Any reason why he hasn't been diagnosed? I ask because my personal way of filling in the blank of "well, when ____ happens, it will officially be not good enough" is nothing huge and actually would probably be something small. It would be the Nth time we couldn't go out because of his illness, or the Nth time I had to coax him through illness-related depression, or the Nth time of . . . whatever. And that would suddenly be too much, and I would leave.
The idea that the illness would continue, indefinitely, with no attempt at addressing the problem, is the dealbreaker, not the individual "straw that broke the camel's back" that would prompt my leaving.
posted by chainsofreedom at 3:28 PM on August 17, 2015 [20 favorites]
The idea that the illness would continue, indefinitely, with no attempt at addressing the problem, is the dealbreaker, not the individual "straw that broke the camel's back" that would prompt my leaving.
posted by chainsofreedom at 3:28 PM on August 17, 2015 [20 favorites]
I'm of the "in sickness and in health" persuasion, but if you aren't married or don't plan to be, I don't know what would convince you to stick around in this situation other than sympathy. I have heard many different emotions proposed as the basis for a lasting non-marital relationship, but sympathy is not one of those.
posted by resurrexit at 3:36 PM on August 17, 2015 [3 favorites]
posted by resurrexit at 3:36 PM on August 17, 2015 [3 favorites]
This can be very hard. I don't think there are any easy answers or obvious end-points. If you just don't want to be together, then you probably shouldn't be together. You'll need to accept that you'll probably feel guilty for ending the relationship when he is ill - that doesn't mean you've done anything wrong.
I think it would help to get better answers here if you clarify what kind of medical steps have been taken and what kind of illness this may be. I think otherwise, you will tend to get a lot of answers about how he needs to take care of himself, needs to be seeing doctors, etc. It isn't clear from your question if that is happening or not, but people will tend to make assumptions.
posted by ssg at 3:39 PM on August 17, 2015 [1 favorite]
I think it would help to get better answers here if you clarify what kind of medical steps have been taken and what kind of illness this may be. I think otherwise, you will tend to get a lot of answers about how he needs to take care of himself, needs to be seeing doctors, etc. It isn't clear from your question if that is happening or not, but people will tend to make assumptions.
posted by ssg at 3:39 PM on August 17, 2015 [1 favorite]
Yes, push doctors for a diagnosis and actually get him in to see people and get tests done.
However, that said. I am basically your chronically ill, undiagnosed partner. And I know you know this, but being the sick one sucks. Like, part of why I get down is because I WANT to do the things I could before. I feel useless and like I'm such a burden to my partner. Plus there's all this hobby-fun-creative stuff that I sometimes just don't have the juice for! I'm sure you're understanding, but really put yourself in their shoes. Think if you suddenly couldn't do anything and you hurt all the time. That may help you get some insight into what's going on with this dynamic.
One thing that helped is my husband saying "I'm here no matter what." For us, it's "in sickness and in health" all the way. If the rest of my life I was stuck in the house, we would adjust. It helped tremendously to know that he was going to support me, no matter what.
So, that means you need to talk to him. You need to figure out what you CAN do together, and what you need as a person to be happy. If you need to be out with friends, then you should be able to do that, too. My husband often just gets out of the house on his own and that's totally fine with me.
I suggest you visit a therapist together as well. Plus, are you guys seeing therapists that understand chronic illness? Mine is very helpful and empathetic to my situation and tries to work around it to brighten my mood and increase my quality of life. She's also been helpful when it comes to really pushing other doctors as she helps with my confidence.
Then, part of this is on him. He needs to really be working on it too. And even if he can't get a medical diagnosis tomorrow he's got to put in the work in the relationship and on therapy. I've been (and continue) working really hard to not let my depression with the situation screw up our relationship. So we have our fun things, like TV shows we watch. And we make up dumb jokes and goof around. And we try to get out when we can. I've worked very hard to try to up my mood and work on my relationship because there was a rock-bottom where I was pretty insufferable. So, he's got to do the work too.
Now, all that said, if this isn't something you can handle, then that's okay too. I mean, I'm married and we take our vows of sickness and health very seriously, but some people just can't be up for some things in life. As a chronically ill person, I totally get it. I wouldn't want to deal with me some of the time too! Because there is a chance it could all get better, there's a chance it's forever, and there's a chance it could land somewhere in the middle and you need to determine what you can wait around for or what you're capable of handling in a relationship.
So, discuss this with your therapist(s), get an idea of where he's coming from, try to plan new activities, figure out what YOU need to be happy, and then make a plan to make all that happen or to move on.
posted by Crystalinne at 3:40 PM on August 17, 2015 [11 favorites]
However, that said. I am basically your chronically ill, undiagnosed partner. And I know you know this, but being the sick one sucks. Like, part of why I get down is because I WANT to do the things I could before. I feel useless and like I'm such a burden to my partner. Plus there's all this hobby-fun-creative stuff that I sometimes just don't have the juice for! I'm sure you're understanding, but really put yourself in their shoes. Think if you suddenly couldn't do anything and you hurt all the time. That may help you get some insight into what's going on with this dynamic.
One thing that helped is my husband saying "I'm here no matter what." For us, it's "in sickness and in health" all the way. If the rest of my life I was stuck in the house, we would adjust. It helped tremendously to know that he was going to support me, no matter what.
So, that means you need to talk to him. You need to figure out what you CAN do together, and what you need as a person to be happy. If you need to be out with friends, then you should be able to do that, too. My husband often just gets out of the house on his own and that's totally fine with me.
I suggest you visit a therapist together as well. Plus, are you guys seeing therapists that understand chronic illness? Mine is very helpful and empathetic to my situation and tries to work around it to brighten my mood and increase my quality of life. She's also been helpful when it comes to really pushing other doctors as she helps with my confidence.
Then, part of this is on him. He needs to really be working on it too. And even if he can't get a medical diagnosis tomorrow he's got to put in the work in the relationship and on therapy. I've been (and continue) working really hard to not let my depression with the situation screw up our relationship. So we have our fun things, like TV shows we watch. And we make up dumb jokes and goof around. And we try to get out when we can. I've worked very hard to try to up my mood and work on my relationship because there was a rock-bottom where I was pretty insufferable. So, he's got to do the work too.
Now, all that said, if this isn't something you can handle, then that's okay too. I mean, I'm married and we take our vows of sickness and health very seriously, but some people just can't be up for some things in life. As a chronically ill person, I totally get it. I wouldn't want to deal with me some of the time too! Because there is a chance it could all get better, there's a chance it's forever, and there's a chance it could land somewhere in the middle and you need to determine what you can wait around for or what you're capable of handling in a relationship.
So, discuss this with your therapist(s), get an idea of where he's coming from, try to plan new activities, figure out what YOU need to be happy, and then make a plan to make all that happen or to move on.
posted by Crystalinne at 3:40 PM on August 17, 2015 [11 favorites]
Get a diagnosis first and work from there. I was diagnosed with a chronic health condition 18 months into my relationship with Mr Bookish; the lead-up to the diagnosis was frustrating for us both but once we had the diagnosis we could work from where we were, where we were heading, and how we were going to figure things out together.
The key word in the paragraph above is together. Some couples don't survive a health situation because they find they grow apart over it; other couples grow closer together. Neither is wrong - it is just how the dice fall. We were one of the couples that faced things together. We found ways of working out what I could no longer do and how this changed the dynamic of the relationship, We worked out how the diagnosis impacted our future plans. We worked out how we can keep growing together as a couple, though one party has restrictions.
I guess what I am trying to say is that you don't know what you are dealing with until you have a diagnosis. And then you need to communicate and work out things together. If you end up deciding that things are not going to work, then so be it. That doesn't make you a bad person (but diagnosis first).
posted by kariebookish at 3:43 PM on August 17, 2015 [7 favorites]
The key word in the paragraph above is together. Some couples don't survive a health situation because they find they grow apart over it; other couples grow closer together. Neither is wrong - it is just how the dice fall. We were one of the couples that faced things together. We found ways of working out what I could no longer do and how this changed the dynamic of the relationship, We worked out how the diagnosis impacted our future plans. We worked out how we can keep growing together as a couple, though one party has restrictions.
I guess what I am trying to say is that you don't know what you are dealing with until you have a diagnosis. And then you need to communicate and work out things together. If you end up deciding that things are not going to work, then so be it. That doesn't make you a bad person (but diagnosis first).
posted by kariebookish at 3:43 PM on August 17, 2015 [7 favorites]
while i agree with much of what Crytalinne says (and am chronically ill myself too - what a fine bunch we are here!) i don't think a few months of good times is the same as taking marriage vows.
it's shitty being ill. but you know you're a drag on other people, and you know those other people have their lives too.
posted by andrewcooke at 3:45 PM on August 17, 2015 [4 favorites]
it's shitty being ill. but you know you're a drag on other people, and you know those other people have their lives too.
posted by andrewcooke at 3:45 PM on August 17, 2015 [4 favorites]
Married 21 years. DH ill since year 5. We spend about 20% as much time together as we used to. Most of the time I deal (in sickness and in health) and sometimes I struggle. But I made a commitment and I show my love by staying and helping him when I can. He finds small ways to show his love and when I do get time with him, it is extra special to me. He does not need a caregiver so I don't do that. He self-isolates because of the sickness and I have to work hard to find other outlets for socialization (meetup.com is one and my church family is another).
MeMail if you want to. I'm glad to talk more about it.
posted by harrietthespy at 3:55 PM on August 17, 2015 [1 favorite]
MeMail if you want to. I'm glad to talk more about it.
posted by harrietthespy at 3:55 PM on August 17, 2015 [1 favorite]
I would add that your partner's condition sounds very, very similar to mine and his is also undiagnosed.
posted by harrietthespy at 3:58 PM on August 17, 2015
posted by harrietthespy at 3:58 PM on August 17, 2015
If he can sit in a chair to play video games he can get out of the house from time to time. Before I got a diagnosis that meant adequate pain control, walking for any notable amount of time got scary and painful for a while, and I found out what galleries and museums (all, pretty much) loan out wheelchairs. I was certainly not wheelchair-bound, but it was the difference between being idle at home and being out and doing normal things, so I did it.
If he is fixated on being unwell and not doing things to try and adjust to his new normal, there may be more than physical health issues going on here. I do not know how patient I would be if I did not see effort being made. You mention "friend groups that are too difficult/stressful to maintain while sick" -- what happens if you suggest having lunch for the group(s) at your place periodically? Lunch is not a very big commitment, time-wise; the food can be very simple; he gets to socialize and stay in the loop with very little effort...
It's just not clear from your post if he is making any effort to be, well, "pro-active." Is he pressing for a diagnosis, and looking for things he can do in his current state, or is it more "whelp, that's it, will xBox it up forever"?
I agree that clarifying the problems and what medical help has been/is being sought would help. "Sex life is still quite good" -- he's up for that, which can really take it out of one physically -- but "creative hobbies...require too much energy"? Sex is a flippin' creative hobby that requires energy!
posted by kmennie at 4:10 PM on August 17, 2015 [6 favorites]
If he is fixated on being unwell and not doing things to try and adjust to his new normal, there may be more than physical health issues going on here. I do not know how patient I would be if I did not see effort being made. You mention "friend groups that are too difficult/stressful to maintain while sick" -- what happens if you suggest having lunch for the group(s) at your place periodically? Lunch is not a very big commitment, time-wise; the food can be very simple; he gets to socialize and stay in the loop with very little effort...
It's just not clear from your post if he is making any effort to be, well, "pro-active." Is he pressing for a diagnosis, and looking for things he can do in his current state, or is it more "whelp, that's it, will xBox it up forever"?
I agree that clarifying the problems and what medical help has been/is being sought would help. "Sex life is still quite good" -- he's up for that, which can really take it out of one physically -- but "creative hobbies...require too much energy"? Sex is a flippin' creative hobby that requires energy!
posted by kmennie at 4:10 PM on August 17, 2015 [6 favorites]
Just wanted to add that regardless of all complicating factors, your happiness is just as important as his. Best wishes, this is an awful situation.
posted by blue t-shirt at 4:19 PM on August 17, 2015 [3 favorites]
posted by blue t-shirt at 4:19 PM on August 17, 2015 [3 favorites]
Response by poster: Originally I didn't want to get too deep into the health stuff but yes, it's probably relevant, and it would have been a huge deal(breaker) for me if he wasn't doing much about it. He has been to a zillion doctors of different types and is absolutely trying to address it. Lots of tests (blood, xray, etc.) but every doctor has kind of shrugged and said "Well based my tests, you seem healthy. Come back in a few months I guess." Which, after a year of this, is pretty maddening. He's scheduled for an autoimmune specialist later this month. His theory (which I agree with) is that he's suffering long-term side effects from taking accutane because he took it twice (a different brand of the same medicine, since accutane itself was taken off the market), once right before we began dating, and has extremely similar symptoms to all the horror stories online around that (except for gastrointestinal stuff, luckily). All his doctors (especially the dermatologists) refuse to acknowledge any possible link between accutane and these kind of side effects though, so he's suffered a lot of medical professionals acting like he's just being ridiculous. Again, enraging. I assume he has been getting adequate medical care because we're in a major city but obviously I'm not too impressed with it. He's also done physical therapy which didn't work, many different supplement-based approaches, acupuncture which helps for the few hours afterwards but he says doesn't feel worth it to continue since it's a very temp fix and doesn't actually heal/cure, just alleviates symptoms for a bit. So he's nearing the "out of ideas" front on the health side, too.
And no, we're not married, but I don't particularly intend to marry anyone so I haven't really given the "in sickness and in health" bit a ton of thought before this.
posted by internet of pillows at 4:22 PM on August 17, 2015
And no, we're not married, but I don't particularly intend to marry anyone so I haven't really given the "in sickness and in health" bit a ton of thought before this.
posted by internet of pillows at 4:22 PM on August 17, 2015
I think the "sickness and in health" thing was just part of answering the question of how those of us who said that made our decision. It wasn't meant to be judgmental. And boy, oh, boy, you and my DH are in the same the symptoms you have described and the way doctors treat you as if it's all in your mind.
((Hugs))
posted by harrietthespy at 4:27 PM on August 17, 2015 [1 favorite]
((Hugs))
posted by harrietthespy at 4:27 PM on August 17, 2015 [1 favorite]
Why are you hanging out in the same space but doing separate things? Like, can you play video games against each other, or something? "Existing simultaneously in proximity to one another" is no way to sustain a relationship.
And if you can't do that (or the idea sounds excruciating) then you need couple's therapy - the kind where the therapist acts as a facilitator and referee.
posted by SMPA at 4:32 PM on August 17, 2015 [5 favorites]
And if you can't do that (or the idea sounds excruciating) then you need couple's therapy - the kind where the therapist acts as a facilitator and referee.
posted by SMPA at 4:32 PM on August 17, 2015 [5 favorites]
Hey, internetofpillows, the lack of a clear answer sucks. It really does - and probably also accounts for a lot of your own feelings about the whole relationship. Maybe it is time for a talk (The Talk?) about what you guys are going to do if things do not get better and if there won't be a clear-cut diagnosis with a magic solution.
I cannot give you a neat answer wrapped up with a bow, but it does sound like to me (a total stranger) like there is a lot of love still left in there. You just sound tired and fed up. Mr Bookish gets tired and fed up too - then he goes off to recharge his creative juices while I am chilling by myself. This works for us, but it has taken a whole lot of work getting to that stage. He used to feel guilty about leaving me to myself (and sometimes it does suck that I cannot join him), but he shares stories when he gets home and it is all good.
posted by kariebookish at 4:33 PM on August 17, 2015 [4 favorites]
I cannot give you a neat answer wrapped up with a bow, but it does sound like to me (a total stranger) like there is a lot of love still left in there. You just sound tired and fed up. Mr Bookish gets tired and fed up too - then he goes off to recharge his creative juices while I am chilling by myself. This works for us, but it has taken a whole lot of work getting to that stage. He used to feel guilty about leaving me to myself (and sometimes it does suck that I cannot join him), but he shares stories when he gets home and it is all good.
posted by kariebookish at 4:33 PM on August 17, 2015 [4 favorites]
Autoimmune disorders suck the big one. Accutane has been held responsible for inflammatory bowel disease in at least one court (hi I have inflammatory bowel disease although not from accutane). I think the best resource for chronic illness sufferers is HealingWell.com -- I have found a TON of information on their forums that I've brought to my gastroenterologist. It's also a great resource for family & friends -- a way to ask questions about various chronic illnesses without judgment and without fear of upsetting your SO. For him, it's a great place to vent. For both of you, there's a bunch of articles completely aside from the forums, which tend to be disease-specific.
Neither of these two books seem at first glance to answer your question, but I thought of both of them while reading your post. Let me know if you'd like more exposition on why I thought of them.
Best wishes. This is a hard row to hoe.
posted by janey47 at 4:49 PM on August 17, 2015 [1 favorite]
Neither of these two books seem at first glance to answer your question, but I thought of both of them while reading your post. Let me know if you'd like more exposition on why I thought of them.
Best wishes. This is a hard row to hoe.
posted by janey47 at 4:49 PM on August 17, 2015 [1 favorite]
Has he seen a psychiatrist? Because he sounds depressed, and could be so even with a chronic pain condition.
posted by spunweb at 5:05 PM on August 17, 2015 [6 favorites]
posted by spunweb at 5:05 PM on August 17, 2015 [6 favorites]
...I feel like a law firm's scare site on Rx drugs might not be the most accurate source of information.
The makers of Accutane got sued, yes, but that means nothing; this 2013 meta-analysis concludes "The results of this study are consistent with other published studies that do not suggest an increase in the risk for IBD with isotretinoin use." Research shows it to be a pretty safe drug, unless one is having a baby.
I feel like the two of you might be dealing with some unaddressed depression/anxiety and have been too busy chasing other causes (and dealing with, frankly, woo pseudotherapies) to notice this. Psychosomatic manifestations of mental illnesses are not not illnesses; they are some very real and very debilitating stuff. But if test after test is coming back normal and you are both hinging hopes on an extremely unlikely diagnosis, I think your next step is a psychiatrist.
Even if he is the picture of excellent mental health despite the difficulties chronic illness causes, I would still expect him to see somebody -- to want to see somebody -- to help him cope. Turning to video games is not really a healthy response to dealing with chronic pain.
posted by kmennie at 5:29 PM on August 17, 2015 [23 favorites]
The makers of Accutane got sued, yes, but that means nothing; this 2013 meta-analysis concludes "The results of this study are consistent with other published studies that do not suggest an increase in the risk for IBD with isotretinoin use." Research shows it to be a pretty safe drug, unless one is having a baby.
I feel like the two of you might be dealing with some unaddressed depression/anxiety and have been too busy chasing other causes (and dealing with, frankly, woo pseudotherapies) to notice this. Psychosomatic manifestations of mental illnesses are not not illnesses; they are some very real and very debilitating stuff. But if test after test is coming back normal and you are both hinging hopes on an extremely unlikely diagnosis, I think your next step is a psychiatrist.
Even if he is the picture of excellent mental health despite the difficulties chronic illness causes, I would still expect him to see somebody -- to want to see somebody -- to help him cope. Turning to video games is not really a healthy response to dealing with chronic pain.
posted by kmennie at 5:29 PM on August 17, 2015 [23 favorites]
This might sound heartless, but I was "the sick one" in a relationship once, and my partner did end it, and I think it was the right decision for both of us. He was super active -- tons of traveling and outdoor activities -- and I was someone who wanted to be super active but physically couldn't. When it was just the two of us chatting on the couch at the end of the day things were great, but there was a growing resentment on both sides because I was jealous of the things he got to do and he felt cheated out of having a partner to share those things with.
It sounds like you haven't been getting out of this relationship want you want to get for a long time and there's no reason to expect that things will improve in the near future. This is a problem that would be cruel to discuss with your partner as it sounds like he has no control over it. There is a person out there for him whose preferences better align with his abilities. Let him find that person, and give yourself permission to find a relationship that better meets your needs, too.
posted by telegraph at 5:44 PM on August 17, 2015 [2 favorites]
It sounds like you haven't been getting out of this relationship want you want to get for a long time and there's no reason to expect that things will improve in the near future. This is a problem that would be cruel to discuss with your partner as it sounds like he has no control over it. There is a person out there for him whose preferences better align with his abilities. Let him find that person, and give yourself permission to find a relationship that better meets your needs, too.
posted by telegraph at 5:44 PM on August 17, 2015 [2 favorites]
Do you guys have a garden at all? Just being able to go outside into a beautiful space, or to create a small but sweet area that you can see through the window, might be nicer than staring at screens all the time. Also, it gives you somewhere to host friends without having to have the house clean.
posted by amtho at 7:46 PM on August 17, 2015
posted by amtho at 7:46 PM on August 17, 2015
Can you go out with him with a manual or powered wheelchair? Outings might help a lot.
posted by Hot buttered sockpuppets at 7:53 PM on August 17, 2015
posted by Hot buttered sockpuppets at 7:53 PM on August 17, 2015
Mod note: One comment deleted. Note that OP has updated with more info, and says partner "has been to a zillion doctors of different types ... Lots of tests (blood, xray, etc.)"
posted by taz (staff) at 3:01 AM on August 18, 2015
posted by taz (staff) at 3:01 AM on August 18, 2015
kmennie hit it out of the park on the first pitch here.
This looks like classic medical transference of mental health. He seems avoidant and depressed.
I did a bit of this in my early 20's. Mental health had been a boogie man in my family so I was scared of it. I sought a medical explanation and chased that rabbit for awhile, torturing my girlfriend at the time with my vague "undiagnosed" medical problems. Luckily it was phase and I got out of that relationship and into proper treatment.
posted by French Fry at 6:24 AM on August 18, 2015
This looks like classic medical transference of mental health. He seems avoidant and depressed.
I did a bit of this in my early 20's. Mental health had been a boogie man in my family so I was scared of it. I sought a medical explanation and chased that rabbit for awhile, torturing my girlfriend at the time with my vague "undiagnosed" medical problems. Luckily it was phase and I got out of that relationship and into proper treatment.
posted by French Fry at 6:24 AM on August 18, 2015
While I absolutely agree that therapy is important for both of you, and while it is true that anxiety has physical symptoms, please don't assume or be bullied into believing that one or both of you are manifesting problems. Auto-immune disorders are very very often quite difficult to diagnose and treat. I'm glad to know that he will be seeing an AI specialist.
Anyone who doubts this doesn't know much about AI disorders. I, sadly, know far more than I would like to. I've been extremely lucky in the respect that my AI disorders have been readily diagnosable and have responded well to treatment, but many don't. See, e.g., Brain on Fire, Meghan O'Rourke's essay in the New Yorker, The Two Kinds of Decay, and the multitude of other writings on these lines.
posted by janey47 at 9:38 AM on August 18, 2015 [2 favorites]
Anyone who doubts this doesn't know much about AI disorders. I, sadly, know far more than I would like to. I've been extremely lucky in the respect that my AI disorders have been readily diagnosable and have responded well to treatment, but many don't. See, e.g., Brain on Fire, Meghan O'Rourke's essay in the New Yorker, The Two Kinds of Decay, and the multitude of other writings on these lines.
posted by janey47 at 9:38 AM on August 18, 2015 [2 favorites]
If you imagine that his health is not going to change, how long would you stay?
posted by spindrifter at 10:25 AM on August 18, 2015
posted by spindrifter at 10:25 AM on August 18, 2015
Chronic illness frequently causes depression; I hope he is seeing a therapist.
In case it is a psychogenic illness, I recommend that you see a therapist and deal with your own responses, and make sure you are not enabling him in an unhealthy way. I'm sorry, that sounds blame-y, and you certainly don't sound as if you deserve any blame.
Men are more likely to leave a sick partner than women. You have not made a lifelong commitment, and you do not have to stay. It may be possible for you to spend more fun time away from his sickroom, to pursue other goals, and I recommend that. You have a life and you should live it. If you stay, stay because you love each other, because you can find a way to have meaning, fun, love, growth. It makes him sad to hear about what’s going on in the normal, healthy world, thus I don’t report much back to him. This is a red flag to me. I would try behaving in a healthy way - caring for him as needed, but also pursuing your own goals, having friends, and sharing it with him, and helping him learn to celebrate your independent life, because you are a person and need to live your life.
If you leave, you will have different challenges; leaving is not necessarily a solution.
posted by theora55 at 12:57 PM on August 18, 2015
In case it is a psychogenic illness, I recommend that you see a therapist and deal with your own responses, and make sure you are not enabling him in an unhealthy way. I'm sorry, that sounds blame-y, and you certainly don't sound as if you deserve any blame.
Men are more likely to leave a sick partner than women. You have not made a lifelong commitment, and you do not have to stay. It may be possible for you to spend more fun time away from his sickroom, to pursue other goals, and I recommend that. You have a life and you should live it. If you stay, stay because you love each other, because you can find a way to have meaning, fun, love, growth. It makes him sad to hear about what’s going on in the normal, healthy world, thus I don’t report much back to him. This is a red flag to me. I would try behaving in a healthy way - caring for him as needed, but also pursuing your own goals, having friends, and sharing it with him, and helping him learn to celebrate your independent life, because you are a person and need to live your life.
If you leave, you will have different challenges; leaving is not necessarily a solution.
posted by theora55 at 12:57 PM on August 18, 2015
Response by poster: To clarify because a lot of people have asked about psychiatrists/therapy:
Yes, (in my non-medical opinion) he is absolutely depressed. As I mentioned in the original post he's been in therapy, but not (yet) a psychiatrist. He's a bit hesitant to go on psychiatric meds since he worries about their side effects, but it is probably worth rethinking. He's been to several therapists throughout the past 6 months. He complains they keep just trying to get him to accept his new life, which it doesn't seem he's ready for, and they apparently didn't get him there. I realize that mental health issues can also onset quickly in your 20s and have physical symptoms, but there is no family history as far as we know, and the physical stuff is so severe and came months before the depression that I would be quite surprised if that were the cause rather than another symptom or result of the chronic pain.
Thank you so much for all your advice. It's been very helpful in thinking through the situation.
posted by internet of pillows at 1:30 PM on August 18, 2015
Yes, (in my non-medical opinion) he is absolutely depressed. As I mentioned in the original post he's been in therapy, but not (yet) a psychiatrist. He's a bit hesitant to go on psychiatric meds since he worries about their side effects, but it is probably worth rethinking. He's been to several therapists throughout the past 6 months. He complains they keep just trying to get him to accept his new life, which it doesn't seem he's ready for, and they apparently didn't get him there. I realize that mental health issues can also onset quickly in your 20s and have physical symptoms, but there is no family history as far as we know, and the physical stuff is so severe and came months before the depression that I would be quite surprised if that were the cause rather than another symptom or result of the chronic pain.
Thank you so much for all your advice. It's been very helpful in thinking through the situation.
posted by internet of pillows at 1:30 PM on August 18, 2015
i wouldn't suggest saying, straight up, "get meds or i leave" (partly because you may leave anyway). but that kind of trade-off is discussed (or delicately danced around) in relationships (i've been on both sides). it's not fun, but it's "normal" (imho). if that's any help. good luck.
posted by andrewcooke at 2:49 PM on August 18, 2015
posted by andrewcooke at 2:49 PM on August 18, 2015
I find it terrifying that so many people assume that just because he doesn't fit into a neat little diagnostic category it must be psychosomatic/depression/anxiety. Modern medicine does not have all the answers, there are plenty of illnesses that are still poorly understood and for which there are limited diagnostic markers. The societal assumption that because there's not a blood test for it yet it must be psychosomatic does many very ill people a grave injustice*.
That doesn't mean he can't try to treat the symptom of depression, though his concerns about side affects aren't unfounded. Hopefully he can find a psychiatrist who can take those legitimate concerns into account in what medications to try and the dosing protocols. Another possible benefit to working with a psychiatrist is that, as they get to know him and work with him more, they may be in a position to help advocate for the depression being secondary to the physical illness rather than the cause of. This can be helpful for if (when) he encounters doctors who make the facile assumption that because they haven't been able to diagnosis a physical illness (yet) it must be psychosomatic.
* Effectively cutting them off from continued help from medical professionals to identify OR treat any physical causes (or often even symptoms) of the illness.
trying to get him to accept his new life
Also, for him, accepting his current life doesn't mean that he doesn't try to change it, it just means that for him, right now, being sick is his reality. That doesn't mean it's his life forever, but at this moment and in the immediate future it is. He has to cope with that whether he accepts it or not. But accepting it will make it a little easier to cope. I do think it's important but it's also probably one of the most difficult things he'll ever do.
what do you do to stay connected and continue to grow the relationship with your partner while they are sick?
This is tough, it can happen but it's probably not going to be what you expected before he got sick. The things that you connect on are going to be limited by what your partner can do, and may be emotionally difficult, or in more limited amounts. This is from my perspective as the ill partner. My husband and I did stay connected, but our shared life was by necessity very small. Some practical suggestions:
how did you know it was time to give up vs. stick with them
I don't know man, that's a tough question even without a chronic illness thrown in the mix. But I think if you feel like you are staying with them just because they're sick, and not because they still add something special to your life that you still want in your life, then that's when you should think/talk about leaving.
Good luck to you both! Memail me if you want for any reason.
posted by pennypiper at 5:15 PM on August 18, 2015 [6 favorites]
That doesn't mean he can't try to treat the symptom of depression, though his concerns about side affects aren't unfounded. Hopefully he can find a psychiatrist who can take those legitimate concerns into account in what medications to try and the dosing protocols. Another possible benefit to working with a psychiatrist is that, as they get to know him and work with him more, they may be in a position to help advocate for the depression being secondary to the physical illness rather than the cause of. This can be helpful for if (when) he encounters doctors who make the facile assumption that because they haven't been able to diagnosis a physical illness (yet) it must be psychosomatic.
* Effectively cutting them off from continued help from medical professionals to identify OR treat any physical causes (or often even symptoms) of the illness.
trying to get him to accept his new life
Also, for him, accepting his current life doesn't mean that he doesn't try to change it, it just means that for him, right now, being sick is his reality. That doesn't mean it's his life forever, but at this moment and in the immediate future it is. He has to cope with that whether he accepts it or not. But accepting it will make it a little easier to cope. I do think it's important but it's also probably one of the most difficult things he'll ever do.
what do you do to stay connected and continue to grow the relationship with your partner while they are sick?
This is tough, it can happen but it's probably not going to be what you expected before he got sick. The things that you connect on are going to be limited by what your partner can do, and may be emotionally difficult, or in more limited amounts. This is from my perspective as the ill partner. My husband and I did stay connected, but our shared life was by necessity very small. Some practical suggestions:
- Meet him where he is - figure out what he is able to do and do it together. He could do a lot of the "leg work" on this, he could search for activities for the chronically ill - this would probably be better done in an online patient support community. Just a few quick ideas of things you could maybe do together: binge watch a favorite/new tv show, listen to audio books in a series (or read if he's able to do that), tell each other stories of places you've lived and wander around the streets using google's map view, do some fantasy planning together (what would you all do if he woke up miraculously healed/won the lottery/on a space station/deserted island/remodeled the kitchen), do a guided tour of each others music library/old photos/favorite childhood shows
- You need to be able to talk about your life outside of him, with him. You don't want to rub his nose in it, but to stay connected you need to be able to be able to share your life with him.
- He needs to be able to talk about his illness, both the practical state of it and the emotional affect of it, sometimes. It shouldn't be the only thing he talks about, but to stay connected he needs to be able to share his life with you.
how did you know it was time to give up vs. stick with them
I don't know man, that's a tough question even without a chronic illness thrown in the mix. But I think if you feel like you are staying with them just because they're sick, and not because they still add something special to your life that you still want in your life, then that's when you should think/talk about leaving.
Good luck to you both! Memail me if you want for any reason.
posted by pennypiper at 5:15 PM on August 18, 2015 [6 favorites]
Wow. The suggestion that he's creating a psychosomatic illness just because it's difficult to diagnose? Just wow.
It's a horrible situation, and you're probably performing lots of unreciprocated emotional labour dealing with his illness and you need to take care of yourself before you crash. It is his job to keep looking for ways to improve his situation. It's your job to support him insofar as you can while prioritising caring for yourself.
I'm the sick partner in my relationship and it does get frustrating for sure. I've been depressed about it. And I've looked for answers for a decade. And there aren't any.
I wish you all the best. And it would be great if people would stop deciding that he's making it up, or more charitably, that his brain is manufacturing his physical symptoms due to emotional causes, just because medicine doesn't have an easy answer.
posted by guster4lovers at 2:05 AM on August 23, 2015 [2 favorites]
It's a horrible situation, and you're probably performing lots of unreciprocated emotional labour dealing with his illness and you need to take care of yourself before you crash. It is his job to keep looking for ways to improve his situation. It's your job to support him insofar as you can while prioritising caring for yourself.
I'm the sick partner in my relationship and it does get frustrating for sure. I've been depressed about it. And I've looked for answers for a decade. And there aren't any.
I wish you all the best. And it would be great if people would stop deciding that he's making it up, or more charitably, that his brain is manufacturing his physical symptoms due to emotional causes, just because medicine doesn't have an easy answer.
posted by guster4lovers at 2:05 AM on August 23, 2015 [2 favorites]
This thread is closed to new comments.
posted by jeweled accumulation at 3:23 PM on August 17, 2015 [5 favorites]