Thursday, December 14, 2006

Chronic illness and relationships

What no one tells you when you're facing a lifelong illness is that it is going to wiggle its way into every one of your relationships. At first, when the symptoms aren't so bad and the drugs aren't so numerous, you think that it's no big deal. Yeah, you're not normal, not fully healthy, but you're not that bad off either. At some point though, the reality sinks in: this thing is going to be around for awhile

It's not a sudden epiphany, but rather a slowly developing awareness that the disease ravaging your body is starting to make your relationships more difficult.
It's hard to get up in the morning.
You can hardly sleep at night.
You don't want to go out for date night.
You're too tired/hurt/sore/depressed to make love.

At some point, it seems, anger and resentment will come from those you love. They can never truly understand what it's like to suffer the pain everyday. They don't understand that some days you're fine and others you're not. Or that the morning can be dreadful but the evening quite pleasant. The cloud of the depression, resentment and hostility is hard to escape in our closest relationships. A wall comes between you and them--one that, in my marriage, I fear will never be completely torn down.


Teresa Nielsen Hayden said...

I've been there. Some years I've leased property there, and considered making it my permanent residence.

My husband and I had only been married for a few years when I was diagnosed with narcolepsy. In between spells of denial that I had it at all, I worried that I was being unfair to him. He was young, he was talented, he hadn't bargained for this.

When I broached the subject to him, he practically burst into tears, and accused me of trying to get rid of him. Then he asked whether I was out of my mind. It may have been the most romantic speech anyone's ever made to me. I can still get sniffly thinking about it.

That was a quarter-century ago. I won't pretend that living with narcolepsy has always been peaceful or easy, but we're still together and wouldn't have it any other way. The short version of how we've done it is that we're two people with one disability, as opposed to being two people, one of whom is disabled.

Sure, my husband resents my narcolepsy. I can't disagree with him; I resent it too. Narcolepsy sucks. And if he doesn't understand it as thoroughly as I do, well, lucky him. In the meantime, I'll explain it to him again.

I don't know what to tell you. Have hope. Be clear and unembarrassed. Remember that no one gets out of this life unscathed. No one is permanently young, lithe, or able-bodied. Sooner or later, we all have to come to terms with illness and old age. Though they come to it later in life, those we love will come to that implacable understanding just as surely as we have.

And with any luck, we'll be there for them when it happens. We'll feel their pain and pure astonished dismay, and sympathize with their frustration. We know that territory. We can tell them that despair passes, anger can be made a source of strength, and a good pharmacist is beyond rubies. And all the rest of it.

So be patient with them. They'll get there eventually.

Anonymous said...

After the second renal failure and the medication-caused stroke and so forth, I decided to stop dating. I can't see dating making my life better. Other people expect things from you and I can't always manage what I expect of me.

At first, it was painful, but 20 years later, I'm pretty content.

I'm not saying that if the perfect guy showed up, I wouldn't consider it. I'm saying I'm not looking.

Anonymous said...

I find chronic illness becomes an entity in it's own right and suddenly there are three of you in the relationship rather than two.

Teresa, I find it adorable that he is a romantic softy since most of his on-line persona I see is so serious.
It's a puppy scale awe.

Patrick Connors said...

As the "healthy" person in my relationship (the wife tried to post here earlier but had trouble.), I've got to admit that I thought long and hard about my wife's psoriatic arthritis before I jumped into the relationship. But by the time we started Officially Being A Couple, I had already done silly things like make sure her scooter would fit into the new car I was buying. She was already planning meals around my blood sugar issues.

Yep, I, too am a romantic softy. But Teresa put it into words better than I could: two people with one disability.

One of the things she does that's very healthy is kick me out of the house from time to time. This is not a bad thing. My ADD/probably Asperger's brain chemistry is such that I need some time alone to recherge the batteries. She recognizes this and tells me when it looks like I need to go off on a retreat. (I leave tomorrow night to visit the snow)

See, that's key: you take care of each other, as best you can.

- Patrick Connors

Bruce said...

Anonymous had it right that the disease makes the marriage a three-way relationship.

The disease (in our case, my wife's severe degenerative rheumatoid arthritis) can be like having an abusive partner in the marriage.

An abuser that you can't get rid of. You can't divorce it, you can't get a restraining order, you can't have your big brothers beat the crap out of it, you can't set fire to it's bed.

You can tranquilize it, or calm it, with drugs and treatments and surgeries. Some of the time. But it never goes away. Never.

You have to live with it. If you're the actual patient, you HAVE to live with it. If you're the other partner in the marriage or relationship, you still -- if you love your partner -- have to live with it too.

But it's not fun. It's a drag. Almost literally, a drag. Dealing with the disease slows down (slowwwwwwwwws dowwwwwwwn) everything else. Days off work have to be scheduled around medical appointments (153 in 2002, tho' that's been the record so far). Every extracurricular activity (dinners out, movies, parties, vacations) are dependent on the vagaries and moods of the disease. It can weigh you both down, and chain you both down, and grind you both down.

But if I had to do it all over again... I would. Because this woman, this extraordinary person, is the person who brought things into my life that I never thought I would have: Joy. And peace. And genuine love.

It's all been worth it. And I hope that I've loved her enough in return that it's been worth it for her too.

Anonymous said...

The difference that I see in my marriage is that we decided to be a couple after nearly a decade of friendship and my husband had seen the toll the disease had already taken on me. He had the opportunity to make the choice. If your relationship predates the onset of the disease, then neither of you had a choice. My first marriage would never have survived this chronic illness. My ex-husband was too selfish. My current husband, who posted above, is an amazing individual and a wonderful partner. Some spouses can't seem to get past, "This isn't what I signed up for." Hopefully your spouse will learn that the resentment should only be felt toward the disease, not the person with the disease. Cause if you are fighting psoriatic arthritis, the last thing you need is a spouse who blames you.

Mrs Chatworthy

Disgruntled Ladye said...

Thanks for all the comments (and for visiting). It's always comforting to know that others have been there, done that.

In our case, the PA came before we met, but it was in remission. My husband's mother has RA, and I thought that he would understand if I got worse one day (though I thought it would be a far off day). He tries.

Unfortunately, the PA is worse than he or I figured it would be. I don't think he has really come to terms with the disease. I can't blame him, it took me a long time to do so, and I live with it.

betsyl said...

oy. i keep writing this and i end up uselessly nattering on.

anyhow. i hear you. many thanks to teresa for pointing over here.

i've had rheumatoid arthritis since i was 16, but i'm currently at a state where the problems i have are caused by the damage that i already have, and not so much by the ra being active. (i think technically i'm in remission, but it's hard to remember that when i stand up and then sit right back down while swearing like a longshoreman.)

Anna Feruglio Dal Dan said...

I think depression contributed to the end of my latest relationship. It might not have been the major factor, but it sure scared the hell out of the other guy. He would constantly be amazed that, while two days ago I was ok, today I wasn't. And he started trying like hell to avoid me.

I think the worst moment came after we broke up. He kept begging me stay his friend, and being hurt when I was distant - but when we had the chance to meet in person, he made himself as scarce as humanly possible. That is how many people react to depression, and that is not how friends react to it.

In a way, it's a useful discriminator. When you're depressed you find who your real friends are. Sometimes it's very painful. Sometimes it's reavealing.

And it's not only the relationship with your spouse that get impacted. Parents can be hit just as hard - and while they don't have the option of divorcing you, they can and do give up. That also has just happened to me. My mother tried for years to "fix" me, and she has just given up, convinced I think that it was my fault of the depression didn't go away.

Disgruntled Ladye said...

Re: Parents.

That's so true. My parents have known about the arthritis for years--they were there when the Drs told me I probably wouldn't be able to walk by 25. They fought to get a diagnosis when no one knew what was wrong. BUT... They still question why I take such toxic drugs, why I go to the doctor so much. Why I can't walk 5 miles with them when they come to visit... It's frustrating.

Kathy Podgers said...

My husband finally left, before I got a correct dx, but he knew all too well the symptoms I suffered from were disabling. he feared the breakthrough episodes, and hated the fact that he was expected to by sympathetic. who was there for him?

In my whole family, only my son stood by me. No one else was able to "believe" in me. Instead they all thought I was "lazy and crazy."

My heart is with you. Kathy

Anonymous said...

There is no doubt that chronic illness is a massive problem both for the patient and loved ones. I have chronic spinal problems and have had 3 operations and about to potentially another 2; all this started 3 years ago and I am only 34 now... It invades every part of my existence and is so pervasive that I sometimes feel it is sucking me out of myself: my life revolves around hospitals- 50 appointments so far this year....However there is something good about it all: you quickly recognise the good friends and real love. Not all days are horrible and when I able to walk without horrific pain I appreciate the simple things and am slowly making some progress.Dont let it get you down be honest with others and yourself and make the most of the good days.

Anonymous said...

Hello everyone, I just wanted to thank everyone for sharing these stories. I am a social worker who recently began working in the area of chronic illness and adults (although I have spent the past 15 years working in chronic illness and children). Personal accounts are helping me to develop a beginning understanding of what adults with chronic illness face. Thanks again.

Anonymous said...

I don't know if anyone is contributing to this site any longer, but the writings have captured the past year of my life. I have a chronically ill husband. We haven't even been married three years and he has spent the last year debilitated and in pain from several abdominal surgeries and various complications. Then he was addicted to the pain meds and lost his job and his health ins. Could it get worse? Our lives have been so altered by disappointment, fear and anger that even our family members have abandoned us. But we are hanging in there with our marriage and altering our lives to accomodate what may come. I guess this is where the vows "in sickness and health" apply. God bless all those who may come across this blog. I was inspired by the other writer's candor and thank them all for sharing their stories. Our lives are forever changed, but we are hopeful for our future together, though it is not the life we envisioned when we said, "I do"!

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Anonymous said...

This may not seem logical to people in the west, but I'd like to mention this anyway: if you ever notice a pattern where someone has a physical relationship with another person or gets married and within the first couple of years one of them develops severe urinary/ kidney or other chronic health issues, it's either because the healthy partner does not have the destiny for a good relationship and whoever they marry will end up getting sick (OR) both partners are mismatched on an energy level and drain each other.

It's the ancient logic behind matching horoscopes to check for compatibility on many levels before arranging a marriage. While that's not a good approach in today's world, it's important to at least try the approach of being celibate and sleeping on an independent bed if you develop kidney problems or other illnesses soon after getting married.

Anonymous said...

I'm the healthy partner in the relationship. We were married for several years before my husband became ill with heart issues. If I had a crystal ball to see what was in store for me before I married, I never would have walked down the aisle. But we have kids. And so I stay in my shrunken little world, consumed by my resentment and his.

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Anonymous said...

I am 42 and a week ago I was diagnosed with diabetes and an inherited high cholestrol illness. I have a good diet and weight 9 stone. There is nothing I could have done to avoid this. When I talked through all the symptoms and the problems with both the conditions including sudden heart failure, my partner said he had pretty much all the symptoms himself although he really didn't. It instantly became 'his' illness and not mine and then after being really difficult to live with for a week and constantly brewing for a row, he left to go back to mummy. I truely pity him as he clearly can not give a relationship anything - he's selfish and 'it's all about him'. Im relieved for myself that I don't have the added stress of him anymore and can concentrate on managing this and feeling better. Truely discusted and disapointed that according to research men are 7 times more likely to leave there partner when they become ill. However, they live with their decisions and carry them with them forever.

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Unknown said...

I have had RA for 15 years.  My husband was there for me during the first episode, which was a rough 18 months. The disease was under good control for years. A move to Germany brought on a nasty reoccurrence. Another rough 18 months and my husband is gone. He resented me instead of the disease and finally all he wanted was freedom from me and my limitations. I am heartbroken. For 18 months I endured not only unbelievable pain but also resentment, anger, coldness and hostility from my formally sweet, generous husband. Chronic illness is not fair.

Anonymous said...


Your husband is a selfish jerk! Would you have left him if the tables were turned? My sweet husband turned mean and resentful too. Calling me lazy and crazy. I finally filed for divorce. We have kids together and I gave up a career to raise them. I've battled 5 chronic illnesses and still fighting. I spend half my life in bed, but still look "amazing." It's a crazy life, but I love my kids and love not having to defend my illness to my selfish, emotionally abusive ex. Good luck to you. You deserve someone who really cares.

Anonymous said...

After several years of marriage and a decade relationship, my husband tells me that he can't take my getting ill periodically with my chronic illness. He rarely wants to stay at home with me, even when I do feel well. He's almost made a new life for himself, and yet, he seems to want me to end our relationship. And, at times, that seems like a good option, so I don't hurt those closest to me when I become ill.
He feels that he is to blame for my illness, even though I tell him neither of us is at fault. I want to be present and listen to his worries, yet I really don't feel that I'm getting the support I need in our relationship.
The bizarre fact is that he is extremely nice to me the day after he says something to the effect of I can no longer deal with this illness you have or your getting ill. He's somehow holding on, and yet, I, too, don't want to be the one to let go. I think I have low self-esteem because I sometimes label myself as less alive than everyone else as person with a chronic illness.

Anonymous said...

I just stumbled onto this. My partner doesn't have PA, but MS. We've been dating just a little over a year. He was diagnosed about 2 years ago, so it's something new for him and he is trying to adjust to a new disease AND a new relationship. It's a very hard balancing act for the both of us. When there are issues, it's hard to know whether it's a personalities issue, a relationship issue, or an illness issue. And that makes it hard to know whether it's something that can and should be worked on and changed or just "is" and has to be accepted.

And it's so hard. Sometimes I'm not sure if I can make it. It IS a rollercoaster every day--is this a good day or a bad day, is he feeling good today? How hot is it today, will he start out good and then get exhausted by the heat?

Oh! Good! It's a good day!! Yay! Now we can enjoy it. What, what do you mean you want to go golfing with your friends? I get to see the behind the scenes struggles and "bad" days so often, I want to be the one to enjoy the good days too, but I know he has to have friends and have fun with them and feel "normal" for a change. It's a really difficult balancing act. I feel selfish for feeling selfish.

Grace said...

Hi everyone. This is my first attempt at blogging. My husband whom I love dearly, is chronically ill - liver transplant, kidneys, low haemoglobin etc. I really appreciate reading all your comments. Its given me heart.
I have so much trouble remaining calm when he rages at me over the tiniest thing. I understand his frustrations and restrictions and fears but I am afraid I can't stay calm when he rages at me. Anyone know a trick?

Anonymous said...

I have read some but not all of the comments and was grateful for them. This chronic illness issue has played a big part in my life. Nearly 20 years ago, my wife and I married. I had some training in nursing so I had some expectation that her orthopedic problems, (hips, knees, back) would give us some trouble, however, we later learned that she had a tendency for endocrine system (non-malignant) tumors which caused a big decrease in her energy level.
Ten years into our marriage, I developed some mental illness issues that became pretty extreme for several months.

I had normally been in very good health and was even involved in some Special Operations type training in the US Army, (National Guard) a few months before the mental illness issues surfaced.

I have lived through days, weeks and months where the resentment over my wife's choices of how she spent the limited energy she had. It seemed there was never an attempt on her part to save some time, and more importantly energy for our relationship.

We are both doing a little better now. I am less likely to become angry over perceived offenses. And my wife has found more ways to show that she appreciates having me in her life.

Is it what I expected? Not at all. But we have two wonderful children, (19 and 16) and there is pretty good communication between all of us. I still get nervous when my wife heads into the hospital for yet another orthopedic surgery but I am coming to understand that this gives me a chance to win popularity points with my wife. It seems that if she can see that I will support her during these acute times, she seems to be better able to deal with me and my frustrations during the chronic times.

Our love is certainly different than I expected and it's a different species than those described on the cover of many magazines, but, I'm coming to like this variety of love. I like impatiens, but I totally respect the ability of pansies to stay alive during a long cold winter to bloom with majesty in the springtime.

My love with my sweet Annie is more like the pansy. We are not yet into spring and the nighttime temperatures occasionally get down into the 30's where growth is stunted and delayed, but this is growth, their are new leaves forming, Spring IS COMING, and now it is coming in spite of the illnesses we have not just because we have had a "vacation" from the troubles.

Yes, I do look forward to the Resurrection so that one day I will be able to go hiking and jogging with my wife but for right now, I'm going to spend some time enjoying this developing pansy in early spring.

Anonymous said...

I fell in love with a man with a chronic illness. It was my first experience with chronic illness. He was so vibrant, beautiful, and wonderful it was hard sometimes to remember how much pain he was in. I'm a therapist and I know he suffered from depression but he would never admit it. He would just disappear and isolate himself. I accused him often of shutting me out because that's what it felt like to me. He tried time and time again to explain his heart and time were not his own but that the illness dictated his life. This was still hard to grasp because in my world absence in a relationship means rejection. Not ones inability to cope with a physical illness to the point that all one can do is cope.
We made plans to begin a life together and I watched them
literally crumble before me as he realized he could not manage both his illness and our relationship. I always toldmhim that his illness felt like another woman because it took him away from me. Yes, there were three in this relationship, and the disease had all the power.
I finally had to walk away because I couldn't handle weeks of no contact. I think I'll be forever changed by this. I wish I could have understood his situation better. He worked so hard to help me understand but I always internalized his withdrawal as rejection. It makes me sad because my lack of understanding often made him feel uneasy about himself and that much more disconnected from the world.
Thank you for letting me share my story. My heart goes out to all of you. A.R.

Anonymous said...

I've been married almost 29 years to my husband. He's developed a form of IBS over the past couple years and it is seriously affecting our relationship. I love him dearly, but he snaps (YELLS) at me for the smallest reason. I understand he doesn't feel well. I really do. And I cut him slack all the time, but it hurts to be screamed at because the tissues are on this side of the couch instead of that side or some such thing. He makes comments like "you must really hate me" when I try very hard to take good care of him. Surely I'm not the only one dealing with this sort of situation. How do you all deal with the hurt and, frankly, anger of living with someone who is ill all the time? I tired of crying.

Taylor said...

All relationships suffer when chronic illness is involved, you're right about that and it's not talked about enough. The public is very unaware of the effects of chronic illness. Families go broke supporting you, significant others feel like nurses instead of lovers, you feel like dead weight around your friends....all very serious issues.

Anonymous said...

I come fromnamslighlty different perspective. I married my husband after one blood clot, thinking that everyone has health issues at times. I could not have been more wrong in this case. After years of progressive medical treatments and more serious issues beyond blood clots including trigemineral neuralgia, I am so lost and depressed, I am not sure what to do, he is housebound and I feel like I am nothing more than a maid and a housekeeper in addition to being a caregiver to my husband. I am only 33. I am young, blonde and sexy but he wants nothing to do with me other than my caregiving and houedkeeping skills. I value my marriage above all and would never be so selfish to leave him when he needs me so much - but what do I do about my needs? He seems so consumed both physically and mentally by his pain that there is no room for me. Please provide advice, I really need help.

Nicole said...

After one month of dating the most incredible man, I fell in love and he was diagnosed with Kidney disease. He struggles with the disease, meds, work, and financial burdens. He frequently seems angry, depressed, tired, in pain, etc. Our relationship has taken a big step backward. Now, I barely get a text and not even a phone call. I try to re-connect but he doesn't respond. What do I do? Keep trying to reach out and move forward? Step back? I'm frustrated, I feel alone, I miss him, I love him. HELP!

Nicole said...

To Anonymous 10/16/12. I do believe they become "consumed" due to their illness. During that time, we are left behind wanting their attention and love, feeling undesirable, frustrated and lonely. These past few days have been the worst for me. I'm totally at a loss. I'm sure this all sounds familiar to you. I can only pray for those who are chronically ill and those in relationships with them. It is so difficult. There are many sites that offer help -- do a search for Chronic illness and relationships. Pray for him, pray for patience, give it all to God. He will guide you.

Anonymous said...

All true. I am living it.

Anonymous said... yourself a favor, and him a service by leaving now. Run, don't walk, and never look back. If you stay you are about to enter a life of pain. I know first hand.

Anonymous said...

My wife's been chronically ill for nearly our entire marriage. After more than 5 years, it's definitely taken a major toll on our marriage. I won't leave her, since she needs me financially and for care, and it seems like a jerky thing to do. But I wish it were acceptable to have an affair, when a sick spouse can't meet a caregiving spouse's emotional and physical needs.

Jay said...

My fiancee and I are both seriously, chronically ill. When we met five years ago, neither of us was nearly as bad as we are now; I had Social Security, but was also able to work some. I cannot work at all now, and she's fighting for Social Security. Pennsylvania ended welfare last summer, so she was instantly left with nothing more than food stamps and Medicaid (We're still thankful.). We're now about to marry, as her Social Security appeals will take years; we'll both continue to exist off of my $750/mo., and $160 in food stamps. We'd both spent our lives working in human services, and now we find ourselves as clients. It can work. Can anyone relate>

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Anonymous said...

These posts are so helpful. Not because they answer my questions on how to cope, but reveal that none of us are alone. My husband has had a chronic illness for nearly three years. Drinks on the wrong shelf, doing his washing, using his fridge space,not being fast enough with something he needs, not hearing him - all ending with him screaming at me. I told him once in private that I felt frightened. He attacked me again, told me he didn't need a histrionic wife as I sobbed in my room. Then slammed the door and repeated my words in a mocking whiny tone. And he doesn't see he's angry. So angry. But my heart feels so bleak most of the time as he'll go from lovely to SNAP, so I can't believe it when he tells me he loves me. Even if this rage only explodes a couple of times a week, it's heartbreaking. I can't talk to him about how it affects him because he is sick of being sick. Yet I also can't have an honest conversation on how it might be affecting BOTH of us because he just goes wild. Tells me I can't get upset. Not that I can't get upset at him, but that I CAN'T - AM NOT ALLOWED TO - feel upset.
But you know, underneath all of this sadness and distress I love him so much. And I think of three things. 1) We want this to be a good marriage for each other and our kids 2) When I had depression, he stuck by me (decided during my depression he'd leave when I got better, but when I got better, I was better, so he stayed) and 3) When you get married "in sickness and in health", "for better or worse", I pray to god this is the worse. And I promised.
I came for answers on how to cope with his anger when it erupts without feeling like I'm going to shatter. I don't think there are easy answers. For what it's worth, I'm going to try harder just to be empathetic, trust it's the third party in our relationship, and find my own physical, quiet space to retreat.

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Anonymous said...

Hi everyone. Thanks for all sharing so openly. I am the ill one in our relationship. I am in pain, exhausted, angry, frustrated, stressed, overwhelmed, depressed and suicidal a lot of the time. My life is not my life anymore. I have been with my partner now for 2 years. When we met I sat him down and told him the worst of me. Ad he said he didn't care. He is amazing. So patient. But because of all that he tolerates I feel as though I can't complain to him about him. When I do I don't know if its a normal amount of whinging or if its my illness. And I feel guilty all the time. I really don't know why he doesn't leave. I nly have a few good hours in the mornings that I am out of bed and time is so precious. I am constantly trying to fit in what I need to do. I am really quite horrible to be around. I tell him I understand as in my last relationship I was the healthy one in a similar situation. I have told him he should leave. I can't stand the stress, guilt, exhaustion of a relationship anymore. I love him so much but I think it would be better to edit. I am so depressed. I don't know what to do.

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