Partner's health problems are really tough on our relationship
January 13, 2015 11:42 AM Subscribe
Trying to deal with my partner's chronic health problems is tough, especially during times of stress. I already have some doubts about our relationship and this is only making it worse. Narcoleptics & narcoleptic lovers, give me your advice! Commiseration is welcome with your advice too. (More below the cut.)
My partner has a magic trifecta of chronic disorders: narcolepsy, type I diabetes, & spontaneous muscle weakness/paralysis (hypokalemic periodic paralysis). Needless to say, it's hard to manage & even harder when he's stressed out. We're often both stressed because we're both in PhD programs.
Some details about his health problems, and how it affects our relationship:
1) His narcolepsy is decently controlled with medication and a consistent sleep schedule. But he becomes a zombie with the consistent sleep deprivation sometimes necessary to get a PhD. The kind of zombie that is emotionally distant, doesn't like to cuddle (because he instantly falls asleep, and that means ~30 seconds of cuddling before bed), and has a hard time understanding if I am upset for any reason. When he snaps out of it he generally feels bad and tries to make it up to me by being extra thoughtful & sweet. It usually makes me feel better because I realize it wasn't intentional -- but it doesn't make the zombie times any less alienating for me.
2) His diabetes is okay, but he is thin and his tendency to forget/skip meals is exacerbated enormously when he's extra hopped up on stimulants to manage his narcolepsy and get by in lab. He tends to lose a good deal of weight when he's stressed out. Generally I try to make him extra meals when I can but I don't want to be his constant caretaker. Sometimes I can barely manage to feed myself.
3) His HPP attacks have become less frequent, but can occur with strenuous exercise (like when we went for a hike one time with a couple of new acquaintances -- that was really not fun). It makes me reluctant to suggest exercise to help him manage his diabetes and stress. He once exercised pretty regularly (maybe to the point of overdoing it), but he'd have to ease back into it to avoid paralysis attacks.
I love him, but sometimes I question whether I can really do this. I was really committed to him and understanding of his physical and health limitations for most of our relationship (we've been together 9 years). But a couple years ago I was going through a very stressful time (anxiety, depression, seeing a therapist for trauma) while we were doing a long-distance relationship. He broke up with me somewhat abruptly because things had gotten too hard and later came back to apologize and reconcile. I was angry but I loved him too much to just let him go.
However, this history has only made me feel less secure about our relationship and about my commitment to him when times get tough. I worry I'm investing all of this energy for no reason. Whenever I bring up these concerns to him he is both very understanding and sad because he feels like he is doing everything in his power to make me feel valued -- and still sometimes comes up short.
This is what I've come up with to help with these issues so far:
- we have two scheduled 'dates' during the week where we are not working. that way we can sync up our lab schedules and maximize the non-zombie time we have with each other.
- i'm trying to manage my own stress so it doesn't affect our relationship. exercise routine, reaching out to a couple new friends, etc. if i can at least feed myself and keep myself sane it will be easier to help him out when he needs it.
- i've asked him to help with food prep & straight up nagged him about bringing lunch and eating it. He has been decent about it since then.
This is where I need help:
- is there anything I can suggest to help him manage his stress / health issues? I still think that the current life/work balance he's teetering along is just unmanageable and unsustainable. It doesn't help that he's under a lot of time pressure with his current experiments.
- how do I make suggestions without making him feel defensive? I know he has to think about his diabetes & narcolepsy every day and it's tiring to constantly manage it. I don't want to make him feel like he's not doing good enough when I know he's already trying hard just to stay afloat.
- is there a place where I can find support for people in similar situations? I read /r/narcolepsy & /r/diabetes on reddit but I feel reluctant to post there since he reads them too. I sometimes just feel alone trying to deal with all this.
My partner has a magic trifecta of chronic disorders: narcolepsy, type I diabetes, & spontaneous muscle weakness/paralysis (hypokalemic periodic paralysis). Needless to say, it's hard to manage & even harder when he's stressed out. We're often both stressed because we're both in PhD programs.
Some details about his health problems, and how it affects our relationship:
1) His narcolepsy is decently controlled with medication and a consistent sleep schedule. But he becomes a zombie with the consistent sleep deprivation sometimes necessary to get a PhD. The kind of zombie that is emotionally distant, doesn't like to cuddle (because he instantly falls asleep, and that means ~30 seconds of cuddling before bed), and has a hard time understanding if I am upset for any reason. When he snaps out of it he generally feels bad and tries to make it up to me by being extra thoughtful & sweet. It usually makes me feel better because I realize it wasn't intentional -- but it doesn't make the zombie times any less alienating for me.
2) His diabetes is okay, but he is thin and his tendency to forget/skip meals is exacerbated enormously when he's extra hopped up on stimulants to manage his narcolepsy and get by in lab. He tends to lose a good deal of weight when he's stressed out. Generally I try to make him extra meals when I can but I don't want to be his constant caretaker. Sometimes I can barely manage to feed myself.
3) His HPP attacks have become less frequent, but can occur with strenuous exercise (like when we went for a hike one time with a couple of new acquaintances -- that was really not fun). It makes me reluctant to suggest exercise to help him manage his diabetes and stress. He once exercised pretty regularly (maybe to the point of overdoing it), but he'd have to ease back into it to avoid paralysis attacks.
I love him, but sometimes I question whether I can really do this. I was really committed to him and understanding of his physical and health limitations for most of our relationship (we've been together 9 years). But a couple years ago I was going through a very stressful time (anxiety, depression, seeing a therapist for trauma) while we were doing a long-distance relationship. He broke up with me somewhat abruptly because things had gotten too hard and later came back to apologize and reconcile. I was angry but I loved him too much to just let him go.
However, this history has only made me feel less secure about our relationship and about my commitment to him when times get tough. I worry I'm investing all of this energy for no reason. Whenever I bring up these concerns to him he is both very understanding and sad because he feels like he is doing everything in his power to make me feel valued -- and still sometimes comes up short.
This is what I've come up with to help with these issues so far:
- we have two scheduled 'dates' during the week where we are not working. that way we can sync up our lab schedules and maximize the non-zombie time we have with each other.
- i'm trying to manage my own stress so it doesn't affect our relationship. exercise routine, reaching out to a couple new friends, etc. if i can at least feed myself and keep myself sane it will be easier to help him out when he needs it.
- i've asked him to help with food prep & straight up nagged him about bringing lunch and eating it. He has been decent about it since then.
This is where I need help:
- is there anything I can suggest to help him manage his stress / health issues? I still think that the current life/work balance he's teetering along is just unmanageable and unsustainable. It doesn't help that he's under a lot of time pressure with his current experiments.
- how do I make suggestions without making him feel defensive? I know he has to think about his diabetes & narcolepsy every day and it's tiring to constantly manage it. I don't want to make him feel like he's not doing good enough when I know he's already trying hard just to stay afloat.
- is there a place where I can find support for people in similar situations? I read /r/narcolepsy & /r/diabetes on reddit but I feel reluctant to post there since he reads them too. I sometimes just feel alone trying to deal with all this.
However, this history has only made me feel less secure about our relationship and about my commitment to him when times get tough. I worry I'm investing all of this energy for no reason. Whenever I bring up these concerns to him he is both very understanding and sad because he feels like he is doing everything in his power to make me feel valued -- and still sometimes comes up short.
Sure is a lot about him in your ask, about how he feels, about his health issues, about how you can help HIM. At what point to do YOU matter?
Sometimes relationships run their course. Sometimes you're hanging in there longer than you normally would out of guilt or out of fear that you're abandoning someone who has a disability.
I think that the mistake was getting back together with him after he left you. He showed you who he was then. You're supportive and concerned and caring, him...not so much.
You can't make someone with a chronic disease(s) manage their health. The fact that he's defensive and you're concerned about even bringing this up to him says that you're walking on eggshells about something you have EVERY RIGHT to be concerned about.
Why are you okay with him doing this? As his partner, you should the first person he turns to for help and he should be working to please you.
Based upon what you've written he's tried nothing and he's all out of ideas. Enough already.
No one will judge you for leaving. Please just do what you want. You're allowed to leave him and not feel guilty about it.
posted by Ruthless Bunny at 12:01 PM on January 13, 2015 [10 favorites]
Sure is a lot about him in your ask, about how he feels, about his health issues, about how you can help HIM. At what point to do YOU matter?
Sometimes relationships run their course. Sometimes you're hanging in there longer than you normally would out of guilt or out of fear that you're abandoning someone who has a disability.
I think that the mistake was getting back together with him after he left you. He showed you who he was then. You're supportive and concerned and caring, him...not so much.
You can't make someone with a chronic disease(s) manage their health. The fact that he's defensive and you're concerned about even bringing this up to him says that you're walking on eggshells about something you have EVERY RIGHT to be concerned about.
Why are you okay with him doing this? As his partner, you should the first person he turns to for help and he should be working to please you.
Based upon what you've written he's tried nothing and he's all out of ideas. Enough already.
No one will judge you for leaving. Please just do what you want. You're allowed to leave him and not feel guilty about it.
posted by Ruthless Bunny at 12:01 PM on January 13, 2015 [10 favorites]
Best answer: - is there anything I can suggest to help him manage his stress / health issues? I still think that the current life/work balance he's teetering along is just unmanageable and unsustainable.
I haven't been narcoleptic or diabetic, but I've been in grad school, and this stress pretty much goes with the territory-- not for every grad student, but for grad students whose temperament makes them react to the situation with overwork/anxiety. This is highly unlikely to change through postdocs/assistant-professorhood-- i.e., there's no magic future time in academia when he will cease to be under so much stress-- so I think it's valid to ask yourself what your long-term plans are for this relationship. It's clear that he barely has enough emotional/physical resources to cope with his career demands, much less handle the basic care and feeding of a dating relationship on top of that. It seems eminently likely that if you envisioned marriage and a family in the future, he will find himself entirely unable to meet those additional demands.
None of this is at all his fault, but the lack of blame doesn't make the situation any better for you. It's OK to decide (with love, and without rancor) that you simply want more than this relationship can currently give you.
posted by Bardolph at 12:05 PM on January 13, 2015 [4 favorites]
I haven't been narcoleptic or diabetic, but I've been in grad school, and this stress pretty much goes with the territory-- not for every grad student, but for grad students whose temperament makes them react to the situation with overwork/anxiety. This is highly unlikely to change through postdocs/assistant-professorhood-- i.e., there's no magic future time in academia when he will cease to be under so much stress-- so I think it's valid to ask yourself what your long-term plans are for this relationship. It's clear that he barely has enough emotional/physical resources to cope with his career demands, much less handle the basic care and feeding of a dating relationship on top of that. It seems eminently likely that if you envisioned marriage and a family in the future, he will find himself entirely unable to meet those additional demands.
None of this is at all his fault, but the lack of blame doesn't make the situation any better for you. It's OK to decide (with love, and without rancor) that you simply want more than this relationship can currently give you.
posted by Bardolph at 12:05 PM on January 13, 2015 [4 favorites]
Well, PhD programs don't last forever. How much longer before your complete the degrees? Perhaps if you think about him in terms of your long-term plans. Are you both looking for academic jobs? Will you live apart when you complete your programs?
posted by feste at 12:17 PM on January 13, 2015 [1 favorite]
posted by feste at 12:17 PM on January 13, 2015 [1 favorite]
Yes, ask yourself what the long-term future looks like to you. Will things change after you both get your degrees? They often do. Will you have to move? Will the stress get worse or better when you get jobs? Can you picture yourself doing these things alone, without a partner? Does that picture make you happier, or sadder?
On preview: jinx, feste.
posted by Melismata at 12:18 PM on January 13, 2015
On preview: jinx, feste.
posted by Melismata at 12:18 PM on January 13, 2015
Best answer: If I could float one of the more common pieces advice in the world of people who've sought PhDs, it's not unwise to remind yourself that you're each essentially in programs that you voluntarily entered knowing that they would be the primary focus of your time and energy for years. The health issues and your history seem a bit secondary to that--this is a relationship juggling two PhD programs.
Did you two discuss this before starting your programs? I feel like there are conversations you can have now along the same lines to take some of the pressure off of one another considering the circumstances. Maybe consider taking a break from being #2 to one another's #1 (PhD) for a while?
This is a common point of contention when couples embark on big projects. Among the list of stereotypical relationship killers: PhDs, buying/renovating a home, caring for an ill parent, the child adoption process, and so on. Of the items on that long list, one virtue of a PhD program is that it can generally come with an end date attached, or at least an approximation. That gives you the upper hand in planning for the future, and maybe the simplest, least burdensome approach is to live your lives mostly separately until you can see what life is like when you rejoin the world with your credentials and regain a real sense of control over your time and attention.
None of that makes sense, though, if you don't actually love this person enough to want to do that, or to endure the hardships associated with your relationship together. I love my partner dearly, immensely more than I've ever loved anyone in my life, and I'll still tell you very frankly that a few things almost destroyed us--including graduate school (I'm younger than he is, so he carried the household financially during that time) and buying/renovating a house (he's a civil engineer and so our clash of opinions always had a paternalistic/professional tinge). What got us both through it was a fairly unshakable confidence that our conflicts were speaking on our behalf, and that the anger and confusion would depart along with the circumstances that provoked them. And as those circumstances evaporated (getting out of grad school, getting our house back), we found one another again.
posted by late afternoon dreaming hotel at 12:22 PM on January 13, 2015 [6 favorites]
Did you two discuss this before starting your programs? I feel like there are conversations you can have now along the same lines to take some of the pressure off of one another considering the circumstances. Maybe consider taking a break from being #2 to one another's #1 (PhD) for a while?
This is a common point of contention when couples embark on big projects. Among the list of stereotypical relationship killers: PhDs, buying/renovating a home, caring for an ill parent, the child adoption process, and so on. Of the items on that long list, one virtue of a PhD program is that it can generally come with an end date attached, or at least an approximation. That gives you the upper hand in planning for the future, and maybe the simplest, least burdensome approach is to live your lives mostly separately until you can see what life is like when you rejoin the world with your credentials and regain a real sense of control over your time and attention.
None of that makes sense, though, if you don't actually love this person enough to want to do that, or to endure the hardships associated with your relationship together. I love my partner dearly, immensely more than I've ever loved anyone in my life, and I'll still tell you very frankly that a few things almost destroyed us--including graduate school (I'm younger than he is, so he carried the household financially during that time) and buying/renovating a house (he's a civil engineer and so our clash of opinions always had a paternalistic/professional tinge). What got us both through it was a fairly unshakable confidence that our conflicts were speaking on our behalf, and that the anger and confusion would depart along with the circumstances that provoked them. And as those circumstances evaporated (getting out of grad school, getting our house back), we found one another again.
posted by late afternoon dreaming hotel at 12:22 PM on January 13, 2015 [6 favorites]
is there anything I can suggest to help him manage his stress / health issues?
Yeah. Get him to acknowledge that he needs to be the person to make managing them a priority. As the situation is now, you're in the position of nagging/being his mom, and he's resentful and guilty for feeling resentful. How is that fun, or sustainable? It isn't.
If he views it as his job to take care of himself, he can still ask you for help (e.g. "Honey, this week is going to be hell - can you help me figure out good snacks to take/set reminders on my phone to eat/other thing you can help with?"
If he can't, or won't, it doesn't have to be your job to make his health the priority.
posted by rtha at 12:23 PM on January 13, 2015 [3 favorites]
Yeah. Get him to acknowledge that he needs to be the person to make managing them a priority. As the situation is now, you're in the position of nagging/being his mom, and he's resentful and guilty for feeling resentful. How is that fun, or sustainable? It isn't.
If he views it as his job to take care of himself, he can still ask you for help (e.g. "Honey, this week is going to be hell - can you help me figure out good snacks to take/set reminders on my phone to eat/other thing you can help with?"
If he can't, or won't, it doesn't have to be your job to make his health the priority.
posted by rtha at 12:23 PM on January 13, 2015 [3 favorites]
....who's going to be the trailing spouse?
Because if it's you, you're going to be really vulnerable to his increasing needs to support (logistical and emotional) and vulnerable to his (possible...) lack of commitment to you if your own situation goes south.
I would hesitate to plan to sacrifice my career to this relationship.
That said I have a sleep disorder and it really, really sucks.
Practical advice: I'm surprised he's on stimulants... I'd expect him to be on something like Nuvigil which is an alertness medication.
You mention he doesn't like to cuddle because it puts him to sleep. If the sex is OK and he's willing to do things like give you back rubs, then I think I'd give this a pass....
posted by bq at 12:24 PM on January 13, 2015 [6 favorites]
Because if it's you, you're going to be really vulnerable to his increasing needs to support (logistical and emotional) and vulnerable to his (possible...) lack of commitment to you if your own situation goes south.
I would hesitate to plan to sacrifice my career to this relationship.
That said I have a sleep disorder and it really, really sucks.
Practical advice: I'm surprised he's on stimulants... I'd expect him to be on something like Nuvigil which is an alertness medication.
You mention he doesn't like to cuddle because it puts him to sleep. If the sex is OK and he's willing to do things like give you back rubs, then I think I'd give this a pass....
posted by bq at 12:24 PM on January 13, 2015 [6 favorites]
I think you need to ask yourself "Can I put up with this for the rest of my life?"
Because even thought you may love him, I am betting the answer is "No".
You're always going to be dealing with his emotional and health issues, even when you're NOT in a PhD program together.
Because of this answer, you better start formulating an exit strategy. This isn't a DTMF issue, this is a "This shit is wearing me out" issue. Big difference.
Once you decide that it isn't working for you, and you deserve better, it will all become easier.
Trust yourself.
Ask the above question, listen to the real, true answer, and go from there.
posted by John Kennedy Toole Box at 12:25 PM on January 13, 2015 [3 favorites]
Because even thought you may love him, I am betting the answer is "No".
You're always going to be dealing with his emotional and health issues, even when you're NOT in a PhD program together.
Because of this answer, you better start formulating an exit strategy. This isn't a DTMF issue, this is a "This shit is wearing me out" issue. Big difference.
Once you decide that it isn't working for you, and you deserve better, it will all become easier.
Trust yourself.
Ask the above question, listen to the real, true answer, and go from there.
posted by John Kennedy Toole Box at 12:25 PM on January 13, 2015 [3 favorites]
Do you want to have children? Do take his health needs into account when factoring that in.
posted by kinoeye at 12:29 PM on January 13, 2015
posted by kinoeye at 12:29 PM on January 13, 2015
Best answer: I feel like much of this could be written about dating a PhD student who didn't have any of the health issues you mentioned. I would set aside those for the moment and focus instead on whether this relationship is making you feel happy and fulfilled.
Take a few weeks where you literally take zero responsibility for his health beyond helping him out with things he specifically asks you for. Let him know you're going to be in a busy period so you're only going to have time to fix your own meals and won't be able to pack him a lunch/remind him/etc. (Note, this is possible! My partner has Type I diabetes and I literally do zero health management for him beyond occasionally getting him a glass of juice when he asks for it.) See how it feels! If you guys break up, obviously he will need to take primary responsibility for his health again, so why not try that now, without breaking up?
Beyond that, you guys have now been dating for 9 years and it doesn't seem like you're very certain of your future together. I'm not one to say that after a certain amount of time people HAVE to get married or the relationship is doomed. I know plenty of very happy couples who never marry because that is what makes both of them happiest, although they are still very committed to each other. However, if after 9 years you're still not sure whether you want to be committed to him either by marriage or just mutual understanding? To me, that spells trouble. How much more about him are you really going to learn that you didn't learn in the previous 9 years? What's going to change? If you're ultimately not happy right now, and haven't been for a while, then give yourself permission to move on and find a relationship that will make you happy.
posted by rainbowbrite at 12:48 PM on January 13, 2015 [3 favorites]
Take a few weeks where you literally take zero responsibility for his health beyond helping him out with things he specifically asks you for. Let him know you're going to be in a busy period so you're only going to have time to fix your own meals and won't be able to pack him a lunch/remind him/etc. (Note, this is possible! My partner has Type I diabetes and I literally do zero health management for him beyond occasionally getting him a glass of juice when he asks for it.) See how it feels! If you guys break up, obviously he will need to take primary responsibility for his health again, so why not try that now, without breaking up?
Beyond that, you guys have now been dating for 9 years and it doesn't seem like you're very certain of your future together. I'm not one to say that after a certain amount of time people HAVE to get married or the relationship is doomed. I know plenty of very happy couples who never marry because that is what makes both of them happiest, although they are still very committed to each other. However, if after 9 years you're still not sure whether you want to be committed to him either by marriage or just mutual understanding? To me, that spells trouble. How much more about him are you really going to learn that you didn't learn in the previous 9 years? What's going to change? If you're ultimately not happy right now, and haven't been for a while, then give yourself permission to move on and find a relationship that will make you happy.
posted by rainbowbrite at 12:48 PM on January 13, 2015 [3 favorites]
Have you ever had a romantic relationship where the other person put you on equal footing? Have you ever been loved and put first most of the time?
You can not survive being second to his issues, including the emotional and maturity stuff.
Despite his physical issues, he could still put you first an decent amount of the time. He doesn't do this and your needs are left unmet. This is not sustainable for you.
I think you need a different relationship and this one has run its course. I'm sorry.
Grad school stress, illness - don't let these things keep you from getting your needs met.
Grad school stress, illness - don't let these things make you into your boyfriend's defacto "mommy" figure.
Got it? Be well.
posted by jbenben at 12:49 PM on January 13, 2015
You can not survive being second to his issues, including the emotional and maturity stuff.
Despite his physical issues, he could still put you first an decent amount of the time. He doesn't do this and your needs are left unmet. This is not sustainable for you.
I think you need a different relationship and this one has run its course. I'm sorry.
Grad school stress, illness - don't let these things keep you from getting your needs met.
Grad school stress, illness - don't let these things make you into your boyfriend's defacto "mommy" figure.
Got it? Be well.
posted by jbenben at 12:49 PM on January 13, 2015
I'm 20 years into a marriage with a man who has had chronic health problems for the last 15 years. You have to decided whether you are both committed to the relationship and what that looks like on a daily basis.
I don't know what else to say besides the fact that it's really, really tough.
Best wishes.
Memail me if you like.
posted by harrietthespy at 12:54 PM on January 13, 2015
I don't know what else to say besides the fact that it's really, really tough.
Best wishes.
Memail me if you like.
posted by harrietthespy at 12:54 PM on January 13, 2015
Response by poster: Thanks for the input so far people.
For the DTFMA posters: I'm not willing to give up yet. Look, everybody makes stupid mistakes and he's fully acknowledged that breaking up with me was one of them. I think working through this history is almost a separate issue in itself but I just mention it because it weighs on me when stuff sucks.
No, I didn't list all of the things he does for me or for our relationship. This was a post about problems, not about all the sunny glowing days where everything is fine and nobody is stressed out. Here's a small list. In the past week after I brought up his insane work schedule, he's cooked several meals for me, did all of the chores before I even noticed, encouraged me to go hang out with new friends, listened to my rants, and been home exactly on time when I have asked him to. And when he comes home he's actually there and not thinking about lab. If he has a lot of work to do, he wakes up extra early to get more done so he can come home and spend time with me afterward. He scoops the cat shit even though he hates it. He makes me laugh when I'm worried. I fell in love with him for many reasons and one of those was that when he is devoted to something he is 100% devoted -- to his work, and to me. He would kiss my feet if I asked him to.
And to be absolutely clear, he has never asked me to make him his lunches, to help him manage his health, or to be his caretaker. I do those things because I love him and having a chronic illness is really crappy. I do not need to do it and I know that fully.
As some people have noted, PhD programs are just hard and stressful without having other issues on top of them. Honestly, if we were not already in this relationship we would probably both be single and working 24/7.
Long term plans: I don't want children. We did discuss that being in simultaneous PhD programs would be stressful and there is an end date to this type of stress. His long-term plan is probably to leave academia and get an industry job. I think that would be much more manageable for him and he has admitted openly it'd be more manageable for his health. My long term plan is to apply for faculty positions and I have a few plan B options in industry if that doesn't work out. I think I would be perfectly happy with either, or maybe happier outside of academia. In all likelihood, we would not be looking for two academic jobs at the same time, and if we were, he'd be the trailing spouse.
Anyway, maybe I should have posted this in health & fitness & not in human relations -- but it feels like a 50/50 split between them.
Okay. Back to PhD work. PMs are welcome too if you don't want to divulge as many details about your life as I have on the internet.
edit: minor notes:
yeah he takes NuVigil also. It's a combo of things that helps.
he mostly takes care of his diabetes on his own. He even buys his own juice.
posted by vreify at 1:10 PM on January 13, 2015
For the DTFMA posters: I'm not willing to give up yet. Look, everybody makes stupid mistakes and he's fully acknowledged that breaking up with me was one of them. I think working through this history is almost a separate issue in itself but I just mention it because it weighs on me when stuff sucks.
No, I didn't list all of the things he does for me or for our relationship. This was a post about problems, not about all the sunny glowing days where everything is fine and nobody is stressed out. Here's a small list. In the past week after I brought up his insane work schedule, he's cooked several meals for me, did all of the chores before I even noticed, encouraged me to go hang out with new friends, listened to my rants, and been home exactly on time when I have asked him to. And when he comes home he's actually there and not thinking about lab. If he has a lot of work to do, he wakes up extra early to get more done so he can come home and spend time with me afterward. He scoops the cat shit even though he hates it. He makes me laugh when I'm worried. I fell in love with him for many reasons and one of those was that when he is devoted to something he is 100% devoted -- to his work, and to me. He would kiss my feet if I asked him to.
And to be absolutely clear, he has never asked me to make him his lunches, to help him manage his health, or to be his caretaker. I do those things because I love him and having a chronic illness is really crappy. I do not need to do it and I know that fully.
As some people have noted, PhD programs are just hard and stressful without having other issues on top of them. Honestly, if we were not already in this relationship we would probably both be single and working 24/7.
Long term plans: I don't want children. We did discuss that being in simultaneous PhD programs would be stressful and there is an end date to this type of stress. His long-term plan is probably to leave academia and get an industry job. I think that would be much more manageable for him and he has admitted openly it'd be more manageable for his health. My long term plan is to apply for faculty positions and I have a few plan B options in industry if that doesn't work out. I think I would be perfectly happy with either, or maybe happier outside of academia. In all likelihood, we would not be looking for two academic jobs at the same time, and if we were, he'd be the trailing spouse.
Anyway, maybe I should have posted this in health & fitness & not in human relations -- but it feels like a 50/50 split between them.
Okay. Back to PhD work. PMs are welcome too if you don't want to divulge as many details about your life as I have on the internet.
edit: minor notes:
yeah he takes NuVigil also. It's a combo of things that helps.
he mostly takes care of his diabetes on his own. He even buys his own juice.
posted by vreify at 1:10 PM on January 13, 2015
Best answer: I'm going to clarify a few things since you asked for concrete practical strategies...
- Do more for yourself, less for him. Explain to him you are going to be refocusing on yourself and that he is going to need to step it up and take care of himself better. Like the adult he is.
- It sounds like you've been together through some pivotal years in your respective growth trajectories towards full adulthood. I'm worried you're caring for your BF has stunted him in some ways and allowed him to coast in his responsibilities towards himself and you. I'm worried this is less a relationship for him, and more of a coping mechanism. I'm sure he loves you, I just.... worry for you, too.
You don't have to stay out of guilt or a sense of responsibility if I'm right and the relationship has run its course. It might take some time and talking to figure out if this can be the relationship you continue. Take on this task and figure this out.
But no, I don't think at this time you need to be doing "more" for anyone other than yourself. You're not married to this guy. He hasn't cared for you up to this point in ways that label him marriage material. Right now, try something new and look out for yourself.
posted by jbenben at 1:15 PM on January 13, 2015 [2 favorites]
- Do more for yourself, less for him. Explain to him you are going to be refocusing on yourself and that he is going to need to step it up and take care of himself better. Like the adult he is.
- It sounds like you've been together through some pivotal years in your respective growth trajectories towards full adulthood. I'm worried you're caring for your BF has stunted him in some ways and allowed him to coast in his responsibilities towards himself and you. I'm worried this is less a relationship for him, and more of a coping mechanism. I'm sure he loves you, I just.... worry for you, too.
You don't have to stay out of guilt or a sense of responsibility if I'm right and the relationship has run its course. It might take some time and talking to figure out if this can be the relationship you continue. Take on this task and figure this out.
But no, I don't think at this time you need to be doing "more" for anyone other than yourself. You're not married to this guy. He hasn't cared for you up to this point in ways that label him marriage material. Right now, try something new and look out for yourself.
posted by jbenben at 1:15 PM on January 13, 2015 [2 favorites]
Posted before I saw your update. My comments are no longer relevant.
posted by jbenben at 1:18 PM on January 13, 2015
posted by jbenben at 1:18 PM on January 13, 2015
Response by poster: jbenben -- yeah, I could definitely be a coping mechanism for him. Thanks for that insight.
He is definitely capable of managing his health on his own though. We were long-distance for quite awhile and I couldn't do anything for his day-to-day issues.
posted by vreify at 1:18 PM on January 13, 2015
He is definitely capable of managing his health on his own though. We were long-distance for quite awhile and I couldn't do anything for his day-to-day issues.
posted by vreify at 1:18 PM on January 13, 2015
So you've been together for 9 years - do you have any thoughts about marriage or children in the future?
One of the traditional lines in a wedding goes "in sickness and in health". It sounds like you're getting a preview of the "sickness" part. Can you deal with this for the rest of your life? If not - then perhaps you should consider getting out now.
Re the breaking up and getting back together: in my experience, many couples do this, and go on to have a successful marriage (or long term relationship). What would concern me in this instance is the apparent imbalance in care: you seem to always be there for him. But he's not so good at being there for you?
This kind of thing can change, but y'all have been at it for a long time. I'd be concerned that you've set up a pattern that is going to be difficult to break out of. And with all due respect, the PhD program will probably not be the end of y'all's stress. Especially if you want to have kids at some point.
Frankly, I think your partner needs some kind of Come To Jesus moment where he realizes that a) he needs to start taking care of himself, and b) he can't simply take you for granted.
FYI, this was posted before I saw your update.
posted by doctor tough love at 1:19 PM on January 13, 2015
One of the traditional lines in a wedding goes "in sickness and in health". It sounds like you're getting a preview of the "sickness" part. Can you deal with this for the rest of your life? If not - then perhaps you should consider getting out now.
Re the breaking up and getting back together: in my experience, many couples do this, and go on to have a successful marriage (or long term relationship). What would concern me in this instance is the apparent imbalance in care: you seem to always be there for him. But he's not so good at being there for you?
This kind of thing can change, but y'all have been at it for a long time. I'd be concerned that you've set up a pattern that is going to be difficult to break out of. And with all due respect, the PhD program will probably not be the end of y'all's stress. Especially if you want to have kids at some point.
Frankly, I think your partner needs some kind of Come To Jesus moment where he realizes that a) he needs to start taking care of himself, and b) he can't simply take you for granted.
FYI, this was posted before I saw your update.
posted by doctor tough love at 1:19 PM on January 13, 2015
Given your update, sounds like there are lots of good, happy-making things in this relationship (yay!) I still think it might be a good idea to take a few weeks where you say: "Look, I love you but I need to focus on me right now, and I need you to take care of you." That doesn't mean you'll never pack him another lunch in your lives, but it might help reset the baseline to something that feels more manageable to you.
And, let it be okay that your physical limitations are different. If you really dig strenuous exercise and it's not in the cards for him right now (or ever), sign up for a kickboxing class once a week and go to it without guilt. The bad thing to do here would be to bully him into engaging in activities that harm his health. It's not bad to do those things yourself if you feel like they're missing from your life.
posted by rainbowbrite at 1:23 PM on January 13, 2015
And, let it be okay that your physical limitations are different. If you really dig strenuous exercise and it's not in the cards for him right now (or ever), sign up for a kickboxing class once a week and go to it without guilt. The bad thing to do here would be to bully him into engaging in activities that harm his health. It's not bad to do those things yourself if you feel like they're missing from your life.
posted by rainbowbrite at 1:23 PM on January 13, 2015
Here is the concern this raises for me; you can't be a lover and a nurse and have time for your own life, all the time. Something is going to give.
If he needs a health aide to help him manage his disabilities, and that's a possibility, maybe that's something to look into. Right now, his health aide is you. And while "sickness and health" means a lot, there is a breaking point for any partner. You need assistance, someone else to monitor him and keep him on track, if he is not able to do it alone. Is there any hope of getting that? Can you step away enough to turn that over to someone else, even to him?
If you could lift the disability aide responsibility off your shoulders, what would your relationship be like? Much better? Still troubled? It's very hard to know with that weighing on you. Yes, it's not his fault he has a disability! But that doesn't mean it's fair to you to get the brunt of all it on top of trying to live your life too. And there's a good chance that trying to be that saintly person will make you crack.
posted by emjaybee at 1:24 PM on January 13, 2015
If he needs a health aide to help him manage his disabilities, and that's a possibility, maybe that's something to look into. Right now, his health aide is you. And while "sickness and health" means a lot, there is a breaking point for any partner. You need assistance, someone else to monitor him and keep him on track, if he is not able to do it alone. Is there any hope of getting that? Can you step away enough to turn that over to someone else, even to him?
If you could lift the disability aide responsibility off your shoulders, what would your relationship be like? Much better? Still troubled? It's very hard to know with that weighing on you. Yes, it's not his fault he has a disability! But that doesn't mean it's fair to you to get the brunt of all it on top of trying to live your life too. And there's a good chance that trying to be that saintly person will make you crack.
posted by emjaybee at 1:24 PM on January 13, 2015
Best answer: This is where I need help:
- is there anything I can suggest to help him manage his stress / health issues? I still think that the current life/work balance he's teetering along is just unmanageable and unsustainable. It doesn't help that he's under a lot of time pressure with his current experiments.
Does he already use gadgets to remind him to do the things he's forgetting? It seems like the root of the issues you're having is that he's not managing his health issues as well as he could. It's not unusual in situations where chronic illness is a factor. Maybe a gadget that reminds him to eat and sleep when it's necessary? The newer fitness trackers have options to create alarms that could buzz him to remember to do things. Or, he could set alarms on his phone to do the same.
- how do I make suggestions without making him feel defensive? I know he has to think about his diabetes & narcolepsy every day and it's tiring to constantly manage it. I don't want to make him feel like he's not doing good enough when I know he's already trying hard just to stay afloat.
This is a situation where I think a dedicated sit-down heart-to-heart is in order. Target specifics and be ready to offer some new ideas of how to manage the shortfalls. He knows he has a lot more to manage than someone without illnesses, so getting defensive when related issues come up isn't OK. Maybe plan for a monthly check-in conversation where you both discuss how you both are managing your life together. The fact that it's a monthly, planned conversation could help to minimize the defensiveness.
- is there a place where I can find support for people in similar situations? I read /r/narcolepsy & /r/diabetes on reddit but I feel reluctant to post there since he reads them too. I sometimes just feel alone trying to deal with all this. Instead of being active on threads for people with those illnesses, maybe find one directed toward caregivers/spouses of people with chronic illness. That's more in line with what your role is anyway. But, I'd also encourage you to do what others have suggested, which is put more of it in his lap again.
posted by quince at 1:57 PM on January 13, 2015 [1 favorite]
- is there anything I can suggest to help him manage his stress / health issues? I still think that the current life/work balance he's teetering along is just unmanageable and unsustainable. It doesn't help that he's under a lot of time pressure with his current experiments.
Does he already use gadgets to remind him to do the things he's forgetting? It seems like the root of the issues you're having is that he's not managing his health issues as well as he could. It's not unusual in situations where chronic illness is a factor. Maybe a gadget that reminds him to eat and sleep when it's necessary? The newer fitness trackers have options to create alarms that could buzz him to remember to do things. Or, he could set alarms on his phone to do the same.
- how do I make suggestions without making him feel defensive? I know he has to think about his diabetes & narcolepsy every day and it's tiring to constantly manage it. I don't want to make him feel like he's not doing good enough when I know he's already trying hard just to stay afloat.
This is a situation where I think a dedicated sit-down heart-to-heart is in order. Target specifics and be ready to offer some new ideas of how to manage the shortfalls. He knows he has a lot more to manage than someone without illnesses, so getting defensive when related issues come up isn't OK. Maybe plan for a monthly check-in conversation where you both discuss how you both are managing your life together. The fact that it's a monthly, planned conversation could help to minimize the defensiveness.
- is there a place where I can find support for people in similar situations? I read /r/narcolepsy & /r/diabetes on reddit but I feel reluctant to post there since he reads them too. I sometimes just feel alone trying to deal with all this. Instead of being active on threads for people with those illnesses, maybe find one directed toward caregivers/spouses of people with chronic illness. That's more in line with what your role is anyway. But, I'd also encourage you to do what others have suggested, which is put more of it in his lap again.
posted by quince at 1:57 PM on January 13, 2015 [1 favorite]
Response by poster: I actually got into weightlifting because he was really into it for awhile -- and continued for a little while when he was first diagnosed with diabetes. I'm still lifting and it's great. I haven't put any pressure on him about it but I do miss having someone to lift with.
I don't really think he needs an aide, because most of it is part-time daily management. With grad student salaries we also probably couldn't afford it. We have joked about getting him a sleep coach though. If someone could write an app that would congratulate you for going to bed on time that would be very cool. He also had a free CGM for a study at one point, which was pretty great, but it's also a big enough expense that he didn't continue with it. I guess I could bring that up as a possibility.
I'm not ready to get married yet for a variety of reasons. One of which is that we started dating when we were both pretty young and we've both changed and matured during that time. Also, as it is clear, we are unfortunately still figuring out what our lives will look in the future and what we each want them to look like.
posted by vreify at 1:58 PM on January 13, 2015
I don't really think he needs an aide, because most of it is part-time daily management. With grad student salaries we also probably couldn't afford it. We have joked about getting him a sleep coach though. If someone could write an app that would congratulate you for going to bed on time that would be very cool. He also had a free CGM for a study at one point, which was pretty great, but it's also a big enough expense that he didn't continue with it. I guess I could bring that up as a possibility.
I'm not ready to get married yet for a variety of reasons. One of which is that we started dating when we were both pretty young and we've both changed and matured during that time. Also, as it is clear, we are unfortunately still figuring out what our lives will look in the future and what we each want them to look like.
posted by vreify at 1:58 PM on January 13, 2015
It sounds to me like you're burning yourself out playing the martyr. And I don't say that in a mean way - I have a tendency to do the same; to put myself last, to always be thinking about how I can be a better partner without thinking about taking care of myself, to feel guilty if I ask for anything or even accept freely offered help.
It's only lately that I've started to accept, for example, that considering I cook every damn meal that gets eaten in our house (along with doing all the meal planning and grocery shopping), I can "let" my boyfriend clean more often than I do without feeling guilty! It's hard, but I work on it. It's a much better solution than feeling guilty, or doing it myself and then feeling resentful.
Between the lines of your post and update, it sounds like you're asking permission to stop trying to be and do everything, and I hereby give it to you. Give yourself a break, give your relationship some room to breathe, and he may step up and surprise you if he's as great as you say in your update.
posted by misskaz at 2:00 PM on January 13, 2015
It's only lately that I've started to accept, for example, that considering I cook every damn meal that gets eaten in our house (along with doing all the meal planning and grocery shopping), I can "let" my boyfriend clean more often than I do without feeling guilty! It's hard, but I work on it. It's a much better solution than feeling guilty, or doing it myself and then feeling resentful.
Between the lines of your post and update, it sounds like you're asking permission to stop trying to be and do everything, and I hereby give it to you. Give yourself a break, give your relationship some room to breathe, and he may step up and surprise you if he's as great as you say in your update.
posted by misskaz at 2:00 PM on January 13, 2015
If someone could write an app that would congratulate you for going to bed on time that would be very cool.
Sleep Cycle actually grades your sleep, with a heavy emphasis on how long you slept.
Between the lines of your post and update, it sounds like you're asking permission to stop trying to be and do everything, and I hereby give it to you.
Agreed and seconded.
posted by jaguar at 2:43 PM on January 13, 2015
Sleep Cycle actually grades your sleep, with a heavy emphasis on how long you slept.
Between the lines of your post and update, it sounds like you're asking permission to stop trying to be and do everything, and I hereby give it to you.
Agreed and seconded.
posted by jaguar at 2:43 PM on January 13, 2015
Admittedly, I haven't read through everyone else's advice... but the one thing that I get from what you said, plus your updates, is that you need to take a step back from micro-managing him. You're choosing to add that, unasked, to your plate, and it would reduce stress on you. It's not fair to blame him for something you've taken on "for" him that he didn't ask you to do.
posted by stormyteal at 12:53 AM on January 14, 2015
posted by stormyteal at 12:53 AM on January 14, 2015
It sounds like getting a PhD is a really poor fit for his set of medical issues. I know this is hard to even contemplate, but has he given any thought to just looking for that industry job now? I have a PhD myself, and lots of people left the program as we went on. They were pretty much all happier after they did so.
posted by Ragged Richard at 8:17 AM on January 14, 2015 [1 favorite]
posted by Ragged Richard at 8:17 AM on January 14, 2015 [1 favorite]
I'd suggest checking into your health insurance coverage or resources at your school to see if you can talk to a therapist. Sounds like you need extra support as you figure out whether your partner's problems are too much for you to bear.
posted by Gray Skies at 8:28 AM on January 14, 2015 [1 favorite]
posted by Gray Skies at 8:28 AM on January 14, 2015 [1 favorite]
...his tendency to forget/skip meals is exacerbated enormously when he's extra hopped up on stimulants to manage his narcolepsy and get by in lab
He needs to keep a supply of nutrition drinks (e.g. Ensure, Slimfast, etc. -- whatever brand is safe for his diabetes) at work and set timers on his phone to remind him to drink one of those every few hours even if he's not hungry or too busy to eat a real meal. Most stimulants make you thirsty enough that you can chug down a nutrition drink even if you otherwise don't have an appetite.
(Source: Timers reminding me to chug a Slimfast every ~3 hours kept me from starving to death at my last high-stress/long-hours job -- ironically I was drinking it to keep weight on, not to take weight off, because it tasted better than Ensure.)
posted by Jacqueline at 1:38 PM on January 14, 2015
He needs to keep a supply of nutrition drinks (e.g. Ensure, Slimfast, etc. -- whatever brand is safe for his diabetes) at work and set timers on his phone to remind him to drink one of those every few hours even if he's not hungry or too busy to eat a real meal. Most stimulants make you thirsty enough that you can chug down a nutrition drink even if you otherwise don't have an appetite.
(Source: Timers reminding me to chug a Slimfast every ~3 hours kept me from starving to death at my last high-stress/long-hours job -- ironically I was drinking it to keep weight on, not to take weight off, because it tasted better than Ensure.)
posted by Jacqueline at 1:38 PM on January 14, 2015
Response by poster: I appreciate everyone's input. I'm a long-time mefi lurker but somehow surprised at how warm these responses are.
It's really not just the micromanagement that is stressful. That's the coping mechanism. It's not being able to predict how he's going to feel one day or the next based on how I would normally feel after a long workday without eating much or a week of sleep deprivation. And that's all muddled by a mixture of his underlying disorders, a mixture of medication, and some poor communication thrown in there as well. I do have a tendency to do too much and take on more than I need to. But it's partly a way for me to try to understand how he actually feels and to try to make our life easier by bridging the gap between a neurotypical able-bodied experience and his experiences.
Then the second -- and I realize now, separate, issue -- is that the past two weeks have been full of 12-14 hour days (for both of us -- more for him), even on the weekends, and those other waking hours are just not enough time for anybody to have a good relationship. It's becoming clear that I am deflecting some of these issues onto his health. I think part of this is because he also sometimes deflects relationship issues onto his health -- e.g., he has to allocate his time and energy differently because of his disabilities, and I necessarily am part of that equation.
But what I'm getting from this discussion is that while he can't control his health issues but he can control how he allocates whatever time/energy he has left. Most of his labmates don't have significant others and often comment about how easy it is to spend all day and night in lab when they don't have a wife or girlfriend to answer to at home. It's not a particularly positive influence to be around all the time and may be rubbing off on him. Although I did claim above that he's 100% devoted to me, I do still think I may be #2 to the PhD #1. I'm planning to talk to him about the fact that I'm unhappy with how things currently are and that he should reconsider how he balances work/life so that he can both be healthy and be there when I need him. And if those are not changes he can make then maybe a break is necessary.
posted by vreify at 7:11 PM on January 14, 2015
It's really not just the micromanagement that is stressful. That's the coping mechanism. It's not being able to predict how he's going to feel one day or the next based on how I would normally feel after a long workday without eating much or a week of sleep deprivation. And that's all muddled by a mixture of his underlying disorders, a mixture of medication, and some poor communication thrown in there as well. I do have a tendency to do too much and take on more than I need to. But it's partly a way for me to try to understand how he actually feels and to try to make our life easier by bridging the gap between a neurotypical able-bodied experience and his experiences.
Then the second -- and I realize now, separate, issue -- is that the past two weeks have been full of 12-14 hour days (for both of us -- more for him), even on the weekends, and those other waking hours are just not enough time for anybody to have a good relationship. It's becoming clear that I am deflecting some of these issues onto his health. I think part of this is because he also sometimes deflects relationship issues onto his health -- e.g., he has to allocate his time and energy differently because of his disabilities, and I necessarily am part of that equation.
But what I'm getting from this discussion is that while he can't control his health issues but he can control how he allocates whatever time/energy he has left. Most of his labmates don't have significant others and often comment about how easy it is to spend all day and night in lab when they don't have a wife or girlfriend to answer to at home. It's not a particularly positive influence to be around all the time and may be rubbing off on him. Although I did claim above that he's 100% devoted to me, I do still think I may be #2 to the PhD #1. I'm planning to talk to him about the fact that I'm unhappy with how things currently are and that he should reconsider how he balances work/life so that he can both be healthy and be there when I need him. And if those are not changes he can make then maybe a break is necessary.
posted by vreify at 7:11 PM on January 14, 2015
But it's partly a way for me to try to understand how he actually feels and to try to make our life easier by bridging the gap between a neurotypical able-bodied experience and his experiences.
A lot of times, doing too much for someone else can actually widen the gap, because the cared-for person stops having to explain how they're actually feeling or what they actually need and the caring-for person starts making assumptions about those things. So the cared-for person stops developing or practicing the skills necessary to identify their own feelings and needs and communicate them, and the caring-for person also stops developing or practicing the skills necessary to identify their own feelings and needs and communicate them, because the caring-for partner's prioritizing their partner's feelings and needs. It can become a vicious cycle that makes things worse, even when everyone's intentions are good.
And in the same way you'd like him to reconsider how he balances his life, you might want to think about how you balance "time spent caring for him" with "romantic or fun time with him" (along with balancing your own life and work too, of course) to make sure you're not letting the balance tip too far into "nurse" rather than "romantic partner."
posted by jaguar at 7:13 AM on January 15, 2015
A lot of times, doing too much for someone else can actually widen the gap, because the cared-for person stops having to explain how they're actually feeling or what they actually need and the caring-for person starts making assumptions about those things. So the cared-for person stops developing or practicing the skills necessary to identify their own feelings and needs and communicate them, and the caring-for person also stops developing or practicing the skills necessary to identify their own feelings and needs and communicate them, because the caring-for partner's prioritizing their partner's feelings and needs. It can become a vicious cycle that makes things worse, even when everyone's intentions are good.
And in the same way you'd like him to reconsider how he balances his life, you might want to think about how you balance "time spent caring for him" with "romantic or fun time with him" (along with balancing your own life and work too, of course) to make sure you're not letting the balance tip too far into "nurse" rather than "romantic partner."
posted by jaguar at 7:13 AM on January 15, 2015
This thread is closed to new comments.
I'm sorry but the subtext here is that this relationship isn't really working for you. You don't want to leave but you know you have to, you just haven't fully admitted it to yourself yet, but it's ultra mega crystal clear from your post. You are going to eventually break up. I think you should do it now. It won't hurt any less in N years when the inevitable happens, and you may also end up with additional resentments and regret the years wasted on care-taking.
posted by mysterious_stranger at 11:57 AM on January 13, 2015 [16 favorites]