Tips for living with someone who has a chronic illness?

March 10, 2012 7:02 AM

Tips for living with someone who has a chronic, serious illness?

I have just moved in with my boyfriend of one year, and one thing I am finding that's different about *living* with him as opposed to just *being* with him is dealing with his chronic illness. He has had a serious issue (kidney problems) which involved major surgery. He is on daily medication for it. He has lived his whole life this way. He is routinely monitored and his health/numbers are very good (and foreseeably will remain so given his current lifestyle habits). There are no "issues" other than the routine stuff he has dealt with his while life.

What I am finding difficult is dealing with the emotional aspects. He has, a few times, used the illness as a sort of get out of jail free card when he has failed to do something he promised---he'll say he can't because he is too tired, the medicine affects his energy levels, he doesn't feel well etc. And if I complain, then I am the bad guy because I am not being sensitive to his medical condition. It's like he has this golden ticket that automatically trumps any needs *I* might have.

I have spoken with him about this and gently reminded him that I do not pull the 'I need you to do this' card very often; when I do, it is for something truly important to me and he has to trust me not to abuse it. And he nods and says of course, absolutely, he understands. But then something will come up, usually something ridiculous (a phone call I ask him to make or something on that level) and all of a sudden, we are fighting again and I am not being sensitive to his problem and he is not doing what I needed him to do.

Fwiw we are both seeing a counselor together---the relationship is good and we are happy, but he is meeting a court order for therapy as part of a divorce settlement so I have been involved---and this is something we are working on. But I would love to get some opinions from other Mefis who may have dealt with this before.

posted by anonymous to human relations (19 answers total)

I dealt with this for many years when my husband developed a chronic illness. Though I didn't recognize it each time I let him not carry his own load, over the long term I ended up being more like his mother because of his increasing helplessness. A therapist I saw advised me to read the book, "Codependent No More." It seemed like an odd recommendation but ended up being SO enlightening and helpful. Basically it is about how to live with someone who cannot give an equal amount in the relationship, whether because of an addiction or a chronic illness. It taught me about holding boundaries, when to give, when to not. And it caused me to really evaluate the unequal relationship we had.

You should probably recognize that because of his chronic illness, he will probably not be able to give 50% in the relationship. If the good stuff is good enough to outweigh this unpleasant fact, then hooray. But maybe not. You have to decide. Just like he has to decide whether he is willing to make the extra effort to get to 50% or not. Neither of you can cajole or convince the other. You each must come to your own conclusions then proceed with the relationship, or not, with that clear knowledge.
posted by eleslie at 7:35 AM on March 10, 2012 [3 favorites]

It's very possible that this has nothing to do with his illness and is just a preferred way of doings things in the world.

I can relate to your boyfriend. One thing I ask of an SO is if they really need me to do something for them to give me plenty of advance warning. There's a sign I've seen around offices which is something to the effect of "Your lack of planning does not make it my emergency."

So in the example above you say "I do not pull the 'I need you to do this' card very often" but then say you get in a fight about "something ridiculous (a phone call I ask him to make". Unless that was a really important phone call that only he could make it seems like there's a disconnect there.
posted by dgeiser13 at 7:41 AM on March 10, 2012 [8 favorites]

As the husband of someone with a chronic illness, I'd say leave him, if you are 100% positive that he's using his illness as an excuse to get out things you ask him to do. Seriously, that shit is unacceptable in a regular relationship, there's zero need to putting up with it when one of you has a genuine, ongoing illness.

But. You do have to be sensitive to his health and needs in that regard. Having a chronic illness can be mentally and emotionally exhausting and some days he may be using the illness as an excuse, because he really is ill, you know? He may just be overwhelmed and did a break, because it can be exhausting in not obvious ways to you.

Here's an example. I'm a Type II diabetic. Say friends call up and want us to try this new restaurant with them. Great, lets go! While everyone else is pouring over the menus, I'm thinking in my head "What can I eat that won't cause my blood sugar to spike? How have my blood sugars been today/this week, would it be ok to eat something with a lot of carbs? What if I mixed it with fat, which slows carb absorption? How many carbs in in this delicious looking dish? There are no numbers, I have to ballpark it? What am I going to eat later and should I adjust what I'm eating now, to so that later meal/snack balances things out?"

That's just one meal. Imagine having to do that every time you eat, it would get mentally and emotionally exhausting. So maybe you need to cut him some slack about some things, because he is ill.

Now. Just because he's ill doesn't mean you don't have needs. You do, everyone does. The hard part, for you, is believing and accepting that you do and that is ok, even if your SO had physical needs that may trump yours at time. It is always ok to ask for what you want or need in a relationship and expect to get it.

You have to remember that ya'll are a team and just like any other aspect of relationship, compromise is key. Ok, he can't do X, can he do Y? If you are, in your words, "complaining" about him doing not X, then you're setting up a bad dynamic, because then one of you is good and one of you is bad. You should reframe this as problem in the relationship that affects both of you and look for solutions that make you both happy. If your idea of solution is that he simply "do what you ask" then you're only thinking of yourself and what's best for you. That's not good, ya gotta take his issues into account, which can be annoying and frustrating. But that's what relationships are like sometimes, you have to go over a few bumps to deal with the good stuff.

Finally, and I say this as gently as possible, based on the few paragraphs you've written, it's hard to tell what is actually going on. You sound a bit put off by his illness and that you don't really get how difficult it may be for him. Your entire attitude comes off as "Oh yeah, he's got this health issue, but it's totally taken care of, so I don't see what his problem is, why can't he just do these things and quit creating problems." I may be mistaken, but that's how it reads.
posted by Brandon Blatcher at 7:47 AM on March 10, 2012 [20 favorites]

I fear it sounds like you're not taking his issues seriously. As someone with an autoimmune disease that requires a lot of medication that causes fatigue, I can let my *own* important stuff slip; if I let a partner's it wouldn't necessarily be a reflection on how much I consider them important. The world, I've found, doesn't typically fall apart when I do things later than I might have when well, so having weighed all things up I'm good with this.

Since you asked for tips so I have this to offer:

For things that need to be done, tell him at such a time that he has a few weeks in which to do it - so he can do it when he's feeling up to it. If you're exhausted it can take some time to psych yourself into doing what are 'silly little' things to healthy people.

Also, if you're a bit full-on about deadlines and things, consider taking a more relaxed approach. Your perspective changes when you experience bad health; what seemed important before, you realise is often not a big deal. :) He may have experienced this and you not and you might be placing different values on things as a result.
posted by springbound at 8:39 AM on March 10, 2012 [5 favorites]

It sounds like you sort of haven't processed how sick your boyfriend is. This doesn't make you a bad person. It's just often how it works: when you're not living with someone who is chronically ill, you see more of their on-game than their off-game, no matter how close you are. They rev up to see you and then crash later if they have to, mostly when you're gone. I say this as someone who has spent a lot of my life living with chronically ill people, and also as someone who was recently diagnosed with a chronic illness myself.

For example, I have been feeling fucking awful for years, but when I tell most people about my illness, their first reaction isn't (like mine was): "oh, that makes sense." It's: "Really? That's awful. I never would have guessed." I mean, for most of the time that I was sick but undiagnosed, I was teaching people how to climb mountains and shit. But for every 4 weeks of trips that I led, I needed another 4 weeks to recover. It's just that most people saw more of the trip-leading me and a lot less of me-curled-up-in-a-ball, because me-curled-up-in-a-ball wasn't very social.

Anyway, in all likelihood, what you're seeing isn't your boyfriend trying to game the system to get out of things. What you're seeing are the real costs of being chronically ill. Being chronically ill and taking medicine that helps control your disease is not the same thing as being totally healthy. Being in pain all the time is exhausting. Medicine that is mostly helpful can also have some weirdo side-effects, which means sometimes chronically ill people are not just fighting their own bodies the whole time. They're fighting all those side effects too. This gets tiring when your body is already a pretty powerful enemy.

I would also be careful of assuming that just because he has lived with this illness his whole life, and just because parts of it are totally routine for him, that his illness doesn't worry him sometimes. Don't make the mistake of thinking that he's got nothing to be afraid of.

All that being said, you've got to learn how to draw your own boundaries and not give up everything like a sacrificial lamb on the altar of his sickness. But this requires sorting through what is never worth compromising on and what is. If, for example, his being sick means he's not interested in having regular meals, then that doesn't mean that you have to give up breakfast, lunch, or dinner. But it might be wise to compromise on things like phone calls (if it's so important to you to call someone, why not call them yourself?).
posted by colfax at 9:34 AM on March 10, 2012 [12 favorites]

Not knowing you or your boyfriend, this question leaves a lot of room for projecting one's own experiences with chronic illness. My ex-husband has a chronic disease that's awful enough, and his case was a severe version of it. I took very good care of him when he was ill, and I pretty much always rolled with the limitations his condition put on our lifestyle. I lived with him for years so I understood what was realistic given his condition, and what was not. All that said - he definitely played the "chronic illness card" for all it was worth. I always erred on the side of being more understanding than not ( ... just kinda my personality ...) but in retrospect it was hard on me. My needs were never prioritized. First not by him, and then not by me. So my tip to you is to be kind to your boyfriend, but you should be kind to and take care of yourself, first.

Also ... court-ordered therapy related to his divorce that you are involved with somehow? That sounds heavy. Are you getting the feeling that his behavior/attitude is not just a function of the illness, but more broadly part of his personality?
posted by stowaway at 9:53 AM on March 10, 2012 [4 favorites]

he is meeting a court order for therapy as part of a divorce settlement so I have been involved

?! Sounds like there's a huge story here, which may be complicating the other issues between you.

Onto the illness stuff. Have you (and has he) ever read Christine Miserandino's "Spoon Theory" essay? Many people with debilitating chronic illness (self included) find it extraordinarily helpful as an explanation of how people experiencing chronic illnesses have to manage their energy differently from currently well and able-bodied people.

Yes, if he is just slacking off on important commitments and using his illness as an excuse, that's not helpful or respectful. But maybe he's not doing that. Or maybe he doesn't know how to say "no" or how to manage his "spoons". Or maybe you or he or both of you aren't good at prioritizing. My husband and I have a priority code about things he really needs me to do urgently and things that can wait until I have extra "spoons". It helps us a lot.
posted by Sidhedevil at 10:01 AM on March 10, 2012 [7 favorites]

There are no "issues" other than the routine stuff he has dealt with his while life.

Living with a chronic illness has been described as living in "a constant state of expectancy." you never know when it is going to get bad again. Living with this medical uncertainty is stressful and difficult. You're always waiting for the other shoe to drop, as it were, and every little ache and pain and morning that you feel just a little more tired than you'd like acts like a trigger: Am I getting sick again?

As for your particular issue, I'm not sure what the "I need you to do this" card is. What kind of stuff do you need him to do? How could you be abusing the right to ask him to do stuff? The phone call example is unclear. Is the stuff you're asking typical living together/roommate stuff, like "I need you to make sure you have enough money in your account to pay the rent" and "don't leave dirty dishes in the sink"? Is it relationship stuff like "I need you to take me on a date once a month"? Without context it's difficult to give good advice. Roommate issues are one thing, relationship issues are another.

If it is roommate stuff you might have to realize that you might have to pull more weight if you want things done a certain way - less because he is sick and more because you are the one that cares about it.
posted by k8lin at 10:09 AM on March 10, 2012 [3 favorites]

I'm writing this from dialysis, so you know where I stand on this.

For me, it's a successful week if I can feed myself, keep the kitchen from becoming a disaster, get out of the house, and do laundry; and I don't have a job. I marvel at how much healthy people manage to get done in a day.

Realize that kidney problems have wide-ranging effects on his body. Anemia, toxins, maybe diet restrictions. Ever had mono? Imagine that every day of your life, with a flu thrown on top on bad days.

Read the Spoon Theory, if you haven't. Some things that healthy people take for granted are surprisingly difficult and draining.

But he should also be adapting to doing things so that he can handle the living-with-people part. He can't cook something complicated if it leaves him with no energy to clean up afterwards. If doing what you asked means not working on a hobby that day, it might be what he has to do (within reason).

Good luck, to both of you.
posted by WasabiFlux at 11:29 AM on March 10, 2012 [5 favorites]

wellspouse.org
You don't need to be married in order to participate.
It's really good to have other people to talk to who have been in your shoes.
posted by luckynerd at 12:15 PM on March 10, 2012

This is such a hard thing. I hope you can both get through it and figure it out.
I've lived with chronic illness for a while now. Sometimes it's all you can do to survive. I can't count the days where I told my SO I'd do something and then failed to do it. I felt terrible but sometimes feeding and taking care of myself was all I could manage that day.

Now it's possible your BF is just using his illness to be lazy.(I've been guilty of that) But he may not be doing it intentionally. Long term illness sucks you into a way of thinking that makes you think you can't do anything. When you pile chronic illness with your natural laziness and personal weakness. It intensifies the problem.

You might want to formally delegate some things. I handle all the bills in our house. It's something I can easily do on the computer. I can write out checks. I can manage the phone bill/tv subscriptions/cable connections, car paperwork. Etc. He could plan menus and make shopping lists. I mean YMMV but talk about the things he can do.

You also may want to suggest he talk to a doc about medication for his mood. For a long time I was moody and depressed. I finally took a small dose of antidepressants. That helped regulate my emotions. But it kind of turned me into an emotional blank. That had it's own problems. But I was better able to handle the stress of life.

nth the Spoon Theory.
posted by hot_monster at 12:17 PM on March 10, 2012 [1 favorite]

Memail me, or if you'd rather, please supply a throwaway email.
posted by uans at 12:56 PM on March 10, 2012

Tip: Believe him. If you can't feel secure in believing him, then spare him and yourself the emotional corrosion of living in a relationship poisoned by mistrust and resentment. When you're dealing with the dreck that serious chronic illness dumps into your everyday life, nothing has a more healing effect than simply being heard and believed. And nothing will make you feel more miserable, angry, helpless and depressed than being undermined by constant doubt.

For a person with a chronic illness, living with someone who tends to disbelieve you, and who does not take you at your word when you say that the illness imposes real limitations on your life, is draining and toxic. If you're committed to staying together, then somehow you need to arrive at a point where, when he says that the illness has affected him in some undesired way, you automatically believe him, because he has given you reason to trust that he wouldn't say it if it weren't real and true. If you're seeing it as a "card" that he's "playing," that's a big, bright, red warning flag. I'm not suggesting that one or the other of you is at fault, because who can tell? But if you're feeling this way, it looks like there's an ominous crack in the emotional foundation of the relationship. Maybe lots of mutual respect and honest communication can repair it.
posted by Corvid at 3:39 PM on March 10, 2012 [6 favorites]

It's like he has this golden ticket that automatically trumps any needs *I* might have.

I read this, pictured him coming across this post on your computer by accident, and bawling his eyes out at that line...

I am not in the "chronic, serious illness" category, but I have been dealing with disabling joint problems for a few years now; I am looking at surgery, I have a disabled parking permit, I have medications that sometimes keep me mobile and sometimes totally suck the life out of me.

What I can do is often very limited -- Nth "spoons theory" article. It is not a "golden ticket." I have to limit what I do, I have to do things slowly. Shit ticket. It isn't "get out of jail free" but "stay in jail feeling bad that you can't do what you want for your loved ones, and your loved ones are taking on an increased burden."

Maybe there are other, real issues with your boyfriend. But as described this is odd...why do you feel somebody you have been intimate with for a year is trying to deceive you?

Is there anything you can do to make yourself feel less burdened, without looking to the boyfriend to do it? Is he eligible for any sort of home help with housework, can you afford a cleaning service, something like that?
posted by kmennie at 6:30 PM on March 10, 2012 [4 favorites]

Nthing spoon theory. It's helped me explain my energy levels and capabilities so much more clearly. You have no idea how much kidney problems can fuck you up. When I'm having kidney issues, it flat out kicks my ass.

Also: your thoughts will influence how much you believe and respect him. You clearly are having doubts and see him as selfish. Even if you aren't saying that to him, if that is your internal narrative, it WILL influence the way you treat him.

If you can't believe him, consider carefully whether you should be with him. It will only get more difficult.
posted by guster4lovers at 9:23 PM on March 10, 2012

Chiming in to agree with all the voices of of those with chronic conditions. Especially Corvid: believe your boyfriend. If you can't, if you continue to think he's playing games with a "get out of jail free" card then for God's sake leave him. When you have a chronic medical condition, there IS no get out of jail free card. There's only making the best of the cards you're dealt each day. I can't think of anything more devastating than living with someone who reserves the right to say, "If you only tried a little harder....." When you're struggling with a chronic disability, it's hard enough hearing that voice in your own head.
posted by kestralwing at 5:35 AM on March 11, 2012 [4 favorites]

Another thing to think about: if he's been sick his whole life, he may think that he's actually being lazy sometimes when he doesn't get a lot accomplished one day. There is a difference between being lazy and being exhausted, but when you're always exhausted and in pain--and have always been exhausted and in pain--then it's weirdly easy to discount it. Somehow it's easier to just assume that you're a lazy bum, or that you're just dumber than a lot of people, and that's why other people breeze through things that take you forever or that you can't finish at all. So if you do confront him about his behavior, it's possible that he'll agree with you that he could have done something that day but just didn't. In that case, it's also possible that he's being an unreliable narrator without realizing it. But if you're listening to just his words, and not his demeanour and what you've actually observed about his energy levels, you'll just get even more frustrated. After all, he just said that you were right and he probably should have done that today, so why didn't he?
posted by colfax at 9:00 AM on March 11, 2012 [3 favorites]

"He has, a few times, used the illness as a sort of get out of jail free card when he has failed to do something he promised---he'll say he can't because he is too tired, the medicine affects his energy levels, he doesn't feel well etc. "

This isn't his get out of jail free card it's his reality.

Have some more compassion for your partner that is living with a serious illness.
posted by anewnormal at 3:07 PM on March 11, 2012 [2 favorites]

I'll also mention that, with chronic illness and kidney disease in particular, it's very difficult to tell between the physical effects of lack of energy and the attendant mental and emotional effects of possible depression and learned helplessness without professional evaluation by a psychiatrist experienced with chronic illness, not just for you, but for him as well.

If he were badly depressed and couldn't get these things done for you, how would you feel and how would you react? If he were getting help for it? If it's any different from how you'd treat him if it were certainly his physical illness, maybe you should look at your attitude toward mental illness.

I'm not saying it's a black and white thing. It's incredibly difficult to tell the difference between illness, depression, and laziness.
posted by WasabiFlux at 6:09 PM on March 11, 2012 [1 favorite]