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Is your spouse chronically ill? How is it affecting you?

By HERWriter Guide March 3, 2018 - 12:00am

Hi All

Thanks to lonely46 for starting this group.

Living with a chronically ill partner can be devastatingly lonely and frustrating, and it's not something society really lets us talk about.

The issue is not about whether we love or care about our ill spouse, it's about the harsh "side effects" that the caregiver suffers. While it's never easy to live with chronic illness, it's also not easy for the caretaker.

Let's share stories about life as the caretaker and the hardships (as well as the joys) of life. We can find comfort and support in knowing that we're not alone.


Here is another resource on sick spouse

By December 21, 2016 - 10:44pm

Hello to all you strong and inspiring people,
This is my first post. Im here because when I read LINDAvera's post I thought I was reading about my own life. I have been with my parter for almost 3 years. Ever since we started our relationship he has always been unwell. He had a parasitic infection about 2 years ago but has since had testing and he has no sign of any parasites. He is suffering from a undiagnosed illness at this stage. We have seen so many specialists and it feels like he has had every test done under the sun to try and get a diagnosis. He suffers from, tingling, dizziness, numbness, nauseousness and the list goes on. His triggers seem to be walking/standing and eating. He has altered his diet to gluten free to rule out coeliacs disease. It is at the point that friends will no longer invite us to gatherings or events because we have turned down so many. I get excited if he feels up to going out to dinner, or the movies or even to the grocery store. There are good patches and bad patches, when its good, I forget about the bad times and I am the happiest person alive. However, when the bad patch rolls around (more often than good) it dawns on me again. I feel like I'm not strong enough to stay positive for the both of us. I feel like my energy levels are being dragged down. When I look at him I see a different person, he is so consumed by his pain. Because my partner hasn't been diagnosed yet, I feel like the worst person in the world as I sometimes wonder if he has developed hypochondria. He seems so in-tuned with his entire body that the tiniest thing will set him off. Sometimes I will go to touch his face or his nose and that will be too much for him. Im 26 and he is 28. I am worried about the future, he has often said that this could be it for us, and that he may never get better. He says that playing xbox takes his mind off his health but it is starting annoy me. We spend most of our time in seperate parts of the house, he will be on the couch playing xbox and ill be in the bedroom. We used to be a team but its feeling less than that now. I love his family and him so very much. The thought of him being healthy gives me butterflies because he is the most perfect human being for me aside from his health issues. I don't want to end it, I don't have the strength or will to do it. But what if in ten years time I regret staying with him, and grow to resent him even more...?
Thank you for taking the time to read my story. I hope you can reserve judgement as I feel horrible enough for writing all of this down.

December 21, 2016 - 10:44pm
By December 18, 2016 - 10:40am

I am so relieved I found this group. I have been very hard on myself all this time because I thought I was being selfish and basically a bad person. I have been with my boyfriend 3years and a half. At the beginning, as most couples, we were extremely happy, discovering and getting to know each other. I had recently gotten over a bad breakup of a verbally-emotionally- and lastly physically abusive relationship. With my boyfriend, I always noticed he was not necessarily fit all the time (I was 28 and he was 33 when we met), stomach problems, headaches, extremely tired, etc. We did some trips together and he would always get sick, so all our trips have been stained with him not feeling well or enjoying. We anyways moved in together a year and a half in the relationship, and his headaches got worse. He said he had them as a kid and was even in the hospital for a couple of months. The year and half we have been living together have been hell for me. He has chronic migraines, with more than 15 attacks per month. Every day he has extraneous pain, he is extremely sensitive to sounds and smell, so I have become a recluse in my own place, a place we were looking so much forward to finding and making our home. None of that happened, we barely did something for the place and "our dreams" because everyday since we moved he has pain, when he doesn't he's recovering from it. We barely talk, no sex for months already, no intimacy, I cannot move freely around the house, whenever we are in the same room he has this dying face, which I feel terrible about because i can only imagine the pain he is going through, however it is really depressing and negative. I dread everyday coming back from work to see him, I am frustrated I cannot do anything at home or whatever I do I hear him complain. The whole house environment is dark and depressive. He have had really horrible episodes of him screaming out of pain on the floor saying I don't get him, understand him, or I cause him more pain because I put more stress on him and that means migraines. I spent like 1 year not talking to anyone about how serious this issue has become and how it affected our relationship. I feel we have no relationship anymore, he always says that he needs understanding and "kisses", and I oblige with the kisses when that's possible. I don't know what more understanding I can provide. We are always separated in the house, he is downstairs and I am upstairs. He watches TV almost the whole day, or listens to music, he has a 2hour/day job (3 times a week tops) and his dad helps him financially, I am getting my PhD degree next year which I presume puts pressure on him. He complains of how frustrated he feels he cannot do anything else, and I understand and suffer that with him too. It is just so sad. I have come home driving and crying at the same time because how terrible I feel, besides lonely and unloved. I am and have always been a very positive person, accomplished, hard worker, alive and happy, and this relationship has made my life so grey. I stayed with him all this time because I hoped something "might" change, a new treatment or something that actually works on him, but that hasn't happened, and I am almost hopeless.. We have talked (very dramatically: he starts crying uncontrollably) of moving out, which might actually help us by taking the relationship-pressure of him, I almost have to promise I wont leave him, and that living separate could remove a lot of stress, but it hasn't happened yet.
I want to escape and lived my life far from this situation. I truly love him so much, and loved the idea of us together, creating a life for us, planning our future, he is and has been the sweetest person I have known, and I suffer when I see him suffering so much that I feel I live heartbroken all the time.

December 18, 2016 - 10:40am
By December 11, 2016 - 8:57am

Hi this is my first post to discuss my situation.

My husband has some sort of undiagnosed illness. He has been symptomatic our entire relationship (11 years - tinnitus, fatigue, brain fog). He is in the process of getting tested for Lyme disease, but if he tests positive he tells me his going to kill himself since is would have been untreated for 15 years and he likely wouldn't get better.

Things have gone downhill over the past couple of years. This year has been especially bad. He's so hopeless and depressed and I'm having a harder and harder time coping with everything.

We have two small children and I'm currently on maternity leave. That leaves me to do all of the financial and household chores. Luckily I had my parents here and they help when they can, but I'm worried that his illness is affecting me and that all of the stress is going to overwhelm me and cause me to have issues too.

I love him and try to support him, but it's hard when he keeps telling me that he wants to die. He tell me how tortured he is and not knowing what's happening to him is the worst. He's had so many medical tests done and everything comes back normal.

I'm just ever so sad and just looking for some support.

December 11, 2016 - 8:57am
By December 11, 2016 - 8:47am

Hi LINDAvera,
I feel like I'm in a similar situation as you. Have you had any luck in getting a diagnosis for your partner? My husband has been in for the last 15 years or so. Basically he's had some sort of undiagnosed illness for our entire relationship. He had been coping pretty well until a couple years ago and now he's so consumed by his illness and his certainty that it is going to kill him. I worry that he's suicidal. It's really starting to weigh on me.

When your partner got tested for Lyme did he do it through Western medicine or a naturopath? I am also in Canada and I've been told that the western medicine test is not very accurate and can have a lot of false negatives. My husband is currently waiting for the results of his Lyme test from the naturopath, but it'll take a month.

Is the new medication working for your partner?

I'm glad you shared your post. It makes me realize that there are others going through similar problems.

December 11, 2016 - 8:47am
By December 9, 2016 - 5:43am

This post moved me and made me feel like I'm not alone in this. Everything you said, I am experiencing too. I particularly related to what you said about sexual attraction and feeling like you are suddenly with an old man. I am older than you, but I still feel I look much younger now than my partner, who also has Ankylosing Spondilitis. Any shred of sexual attraction I felt for him has gone. i still care about him and feel terrible about the pain he is going through, but the romantic connection is gone, vanished. And I'm young enough that I could still have love/sex/romance in my life. So I am torn. Do I give all that up and stay with him? My partner, like yours, is always depressed; his expression is one of pain and sadness. When I come home after work I feel heavier than when I was there. The atmosphere is oppressive. I know he's aware of it and feels bad, but he tells me it's not likely to change as his condition is only going to worsen. The biologics did nothing for him. I sincerely hope your partner finds relief with them. In my mind, I am constantly planning my escape and have even found the apartment I would move to. But after 30 years together this is a hard hard decision to make. I know I will continue to look after him and keep contact and be his friend, but I long for a lighter, freer atmosphere. Luckily our children are grown and independent and they support me 100%. I hope you can find some peace in all this - you are not alone!

December 9, 2016 - 5:43am
By December 5, 2016 - 8:24pm

I'm in the same boat. My husband is ill with some chronic conditions and has not worked in over 11 years. Since then, I have been financially providing for our family and I am so tired. I know it is no the same but when I am sick, I can take off a day at the most and have to go to work whether I feel like it or not. I have been a good wife being there for him and helping him but my goodness. At this point, I feel like I am being an enabler to him not working. I always feel bad because I think, if I were to be chronically ill, wouldn't I want him to do the same for me? but I am thinking the old fashioned way and think a man is supposed to support his wife financially. I know times have changed and I am only 35 but I just can't get over it. I make enough to support us all but I'm worn out. It's not like I come home to home cooked meals when I get home. I'm on my own to cook. He does help me when I don't feel well by getting things for me and making sure I get better but I don't know if I can keep taking this life. I believe in God and pray about this and don't want to divorce but...I have given ultimatums, no change. He used to work for a really good company but was fired due to missing too many days from being ill. I have asked him about doing something working from home and he is not willing to do so. He says he can't sit in front of the computer that long and gets sick. It sounds easy to say just leave him but we have a daughter and she would be devastated. Advise?

December 5, 2016 - 8:24pm
By November 24, 2016 - 3:34pm

Hi everyone,
This is my first post. I feel guilty for having negative feelings when my husband has been kind to me when I am ill. But because I'm younger, I have a lot more energy than he does. I am 41 yrs old. He is 15 yrs older than I am. We were married for 3 yrs. We have never had sex yet, not once. We are Christians, so I naively thought, sex will just come since we honored God and saved it. (I'm a born again and I had a lot of sex before I committed to the Christian faith) I have had hesitance and regrets about staying in the relationship. I keep hoping it would get better, as he has hoped and promised. However, the reality has been - he doesn't participate in most of the social events, family events and physical activities that I want to do for the past 3 yrs. This is because he usually needs to be home, recovering from something- social anxiety, cold, stomach issues, early prostate cancer treatment, panic attacks, sinus infections, irritable bowel... etc. I still hope it will get better, but I've just lowering and lowering my expectations of what life can be for us. That makes me sad and depressed when I really think about it. Now at I'm at a point when he's sick and has to skip a family event again, inside I get angry and irritated at him. Sometimes I even make snide remarks, which I'm not proud of at all.


November 24, 2016 - 3:34pm
By November 10, 2016 - 7:19am

To have found this group for me is life saving, to know I'm not the only one who feels this way as ive been feeling like such a cow and so selfish.
I'm 36, my husband is 39. He has a 15 year daughter who comes to stay every week and we have two boys under 10. we have been together for 10 years this time and were childhood sweethearts with a 15 year break - long story.
He has been diagnosed with ankylosing degenerative spondylosis. He has always has back issues and what we have always known as arthritis of the spine. he has always been on medication, But he has still always been fit, muscly, toned, healthy as such, the joker. skip to now and his condition has worsened by 100%.
He can literally just about walk, and when he does its with a terrible lopsided jolting. To get up or sit down takes 20 mins. to go up stairs longer. He is 39 but has a 70 year old body. He has lost 2 stone due to anemia. they have tried all sorts of meds but nothing seems to help enough, steroids, injections. They are about to start him on a new biologic drug which we will have to inject at home every two weeks but not holding out much hope as they last super injection they gave him which they said lasted 99% of people two weeks lasted him 24 hours.
My problem is I'm struggling to cope with it all. Before it all got worse I would do most things anyway in the house and for all the kids, his included. but he would help out washing up or hovering. he could play with the kids or do bathtime. I also work from home and am studying law and psychology at uni from home.
now he cannot do anything, he is always in so much pain every movement hurts, or he is asleep. so I'm now mum and dad, as well as cook cleaner maid and carer. I feel he now has just given up, he feels a failure I know that and hates how he is, but instead of pushing on and trying he gives up and feels sorry for himself. he wants sympathy from me, but I just don't have it in me to give. I literally have nothing left. I do all the finances as well which at the moment because of his illness we are struggling to deal with, and am looking for another job.
I just feel I'm putting everything in and losing Kerry. I'm just here to serve everyone. whilst he just lays back and feels sorry for himself.
I feel so bad as I know he is in so much pain, and I know it isn't his fault or anything he can or could of done to change it but he just doesn't help himself. I think he is also depressed (maybe me also) as is always so miserable and me and the kids are always walking on eggshells around him. his face is constantly frowning and its such a drain. he is so negative, nothing positive comes out of his mouth in any day. and I don't have the energy to care for him the house and the kids but also be his mental help and bring him up. when he has the opportunity to do something with us as a family ie watching the eldest boy play hockey he choses to stay home to rest. Wheres my rest?
I have no family to support me, not many real friends and his family aren't really interested they just think get on with it. But living it is completely different. I'm 36 and feel my life is over. Our future is gone. We planned to when the kids were all grown to travel and see the places that we wouldn't want to take young kids to ie new York, Miami, vegas but now most of that is out the question as he can hardly move.
Its also quite embarrassing, I'm young and if you couldn't see his face you would think I was with an elderly man. so selfish I know and shallow.
Another thing is sex. I just don't feel attracted to him the same way anymore. I love him but it feels different. when I look at him I don't see my young husband I see an old man shuffling along.
I wish I could just suck it up and deal with it but its so hard. so knowing other people feel the same really does help. He just thinks I'm a horrible cow who has no sympathy and am hard. But I used to have, its just been going on so long now, and the pains he has I know about he tells me daily.
I'm sure I come across awfully as it has all kind of fell out my head on to this page so sorry if its a bit jumbled. its good to find people who understand.
onwards we must go.....x

November 10, 2016 - 7:19am
By November 1, 2016 - 3:10pm

Hi Everyone
This is my first post! I read through the comments and thoughts on here with such sadness but so much relief. Sad because others are going through exactly what I am going through but a relief to know that it is not just me that has such dark thoughts and feels so stuck and lonely.
My husband has a long term disability and several other serious health issues which makes life so difficult at times.
He has always been a negative person and cannot see the good in anything. He does suffer with chronic pain. His only outlet is me and he is beginning to vent more and more. In some ways he needs to vent but it hurts. Not physically but emotionally to be told over and over again how useless, waste of space etc etc I am.
The weekends are the worst, he just goes for me over and over again. There are times I feel so desperate my only way out seems to be hurting myself.
I stay because I love him and he needs me. Thank you so much for letting me say what is going on in my head - I just needed someone to listen who understands.

November 1, 2016 - 3:10pm
By October 31, 2016 - 11:00am

I am in the same boat to some extent.
Been in this situation for about 10 years.
No real medical care because all my non-compliant Diabetic husband wants to do is die, I think. He will only take meds so he smokes and doesn't exercise etc. Because he looks "ok" (for an old guy), and he doesn't socialize so nobody sees his long-term behavior, people don't really think he's that bad and I seem like I'm making more of it than it is. That's SUPER frustrating!
Dr's try, but he argues with them and refuses their attempts to get him on the right track.
Same problems here with feeling guilty, EXACT same sex life problems. But I can't tell him how I feel because that would hurt his feelings SO bad!
Yet I feel like I should be honest with him. Don't know what to do about that. . .
One thing I know is that in this life you are gonna have to serve somebody.
And more than once. If not this than some other.
If you can manage the caring but not the physical set-up, then change the part you can't manage: get a new situation.
Separate yourself from his finanacial and daily living situation by getting a place of your own. He can figure out how to file as "Disabled" and get help but also try his hardest to do his best to take care of his business, which he won't do if you are doing it. Period.
Then you can love him and come and be with him and care for him with a fresh and loving attitude, even though you'll still be exhausted.
Just an idea.

October 31, 2016 - 11:00am

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