Sarcoidosis is not an excuse to be a self absorbed jerk.

Posted , 6 users are following.

My husband has had sarcoidosis for 4 years. In that time I have been his primary caregiver. He works sporadically health depending so I have been the sole bread winner plus I do everything around the house (kids, laundry, cleaning, groceries) all of it. This is fine and I am happy to do it. At least I was. I am fed up and so so so so so done. Not with being his caregiver but with being made to feel like I am the less important person in our relationship. I know he has a chronic illness and need to take care of himself but he doesn't ever consider how I am doing at all. He is the most important.

About 6 months ago I started to feel very tired and run down. At first I thought it was caregiver fatigue but it just got worse and worse. My husband would get up from the table after dinner and say he is going to bed and I would want to cry. The kitchen was a mess, the kids needed to be put to bed and I was sooooo exhausted. I started to think, when is it my turn? When is he going to notice I am really struggling? He is sick BUT he does golf once a week and does modified work-outs depending on his energy. If he can do that he can put his dishes in the sink.

last month I passed out at work. The world started to spin and my heart was beating so loud it was crazy. I couldn't catch my breath and went down. Got sent to a cardiologist and have a faulty mitral valve. need surgery. Now the exhaustion makes sense. Husband is very concerned.... about HIMSELF!!! Who will look after him? Who will cook his meals? He is sick after all. He has not once shown an ounce of concern for me.

I got up this am and was so tired I could barely get out of bed. My husband is snoring away beside me. I nudged him and asked him if he could help with the kids and breakfast as I was feeling really awful and he got mad. Told me that he needed to take care of his health and I would have to figure it out. My "issues" were not going to put him at risk???

I am now at a friends house. I am leaving his ass.

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11 Replies

  • Posted

    I'm not sure, exactly, what compelled me to respond to your message.

    i am so sorry you are in pain, both physical and mental.

    i do believe you made the right choice, however, and hopefully, your husband will snap out of his "it's all about me" mode.

    He has been sick for 4 years and you have catered to him the entire time.

    He doesn't remember how to give.

    Hopefully, he will wake up and realize that he needs to be there for you.

    That's not always easy for men in general and especially one who has been pampered for so long.

    i wish you good health, and good luck with your surgery, and happiness in your life.

    Barb

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  • Posted

    It's understandable to feel slighted but I have similar situation but Jesus makes the difference as the one who keeps it together. I too have health issues now but communication to him that to always listen about illness is wearing and  ot healthy gor anything.  . Maybe if you offer him to sit w counselor or therapy you can save your family and find renewed joy. God can do this. Don't. Give up hope. Families are so important. I wish you all the best.

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  • Posted

    This seems to have very little to do with illness, but quite a bit to do with relationship issues. Having a chronic ailment doesn't entitle you to be , quote ' a self-obsessed jerk'. At the same time , being a carer doesn't mean that you have to be a full-time slave or a doormat.

    Your husband sounds to have being exploiting your helpful nature. He plays golf? He works out? He is taking the p**s. So pleased that you're getting out now. Go somewhere where you are appreciated and leave him to learn how to be an adult.

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  • Posted

    I can understand how this all makes you feel. I'm the one who is sick I inject myself every week with chemo. My husband goes to work everyday and comes home and takes care of me. I was going through self pitty for years not knowing when my heart will stop beating due to the sarcodios has infected my whole body. only thing left is the brain stem that hasn't been attacked yet. I've somehow found the strength to get out of bed and start doing things for myself. It's  hard but I just push through it. I am so sorry you were treated so badly. After reading what you wrote has given me an insight as to what my husband has been dealing with. I will NOT ALLOW myself to let him feel as if he doesn't matter anymore. His pain is just as Important as mine. He served in the Army for 21 years as an MP and he has been over sea's more than 8 times during the wars. He has suffered a great deal he fights with PTSD . And all this time I've been all about me. NO MORE!! Thank you for opening my eyes to how our care takers feel. I wish you the best and a happy life where ever it may take you.

    Gina

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  • Posted

    If he's golfing and working out, he should be working to support his family and helping his wife. I  work a full time job and help with the kids and my pain is sometimes unbearable but I can't just lay there and do nothing.  Seems like a bum. No offense. My wife is wonderful and takes care of me when I'm having a bad day and helps me but I try and don't give up.   Good luck

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  • Posted

    Thank you to everyone who replied to this message. I was really angry and hurt when I wrote it. Mostly hurt to be honest. I have loved and cared for my husband throughout his illness. I was in a Master's program that I loved when he was first diagnosed and I dropped out so I could get a job and be the bread winner and allow him to focus on his health. The last 4 years have been all about getting him and keeping him healthy. The thing is he has turned into someone I don't know. At first I thought it was the prednisone but he has not been on that for years.

    I have my surgery last week. My husband didn't come to see me once when I was in hospital. He said that he couldn't risk the germs from the sick people causing a flare. I had a really good cry the second night I was in hospital. I spiked a fever and was feeling like crap. I realized that I was truly alone. He doesn't care about me. His only question to my cardiologist when he went to my pre-op apt was "how long will she be unable to work?". My doctor said about 6 weeks and my husband said asked how bad would it be if I went back sooner.

    I am home from the hospital but at a friend's house. My husband and I are officially separated. I know he is worried about finances but I guess he will have to get a job.

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    • Posted

      Sorry you had to go through all that alone. My husband isn't sick but fights with me when I relapse and can't breathe he'd drop me off at the ER entrance and leave. I hope you recovery goes well. And as for your husband . Some men just never grow off the breast milk. And they rely on the females to do it all. Even when we are sick we don't get sick days as mother's etc. Hope he has fun going back to work and supporting himself

      Gina

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  • Posted

    I am really sorry that you have not been supported through your illness. Feeling unwell and being dropped off at the emergency by yourself must be a very frightening feeling. When my husband was first diagnosed I poured through support groups and was appalled at the amount of people who felt unsupported by their caregivers. I vowed he would never feel that way. I think that is why it took me so long to realized that I may be taken advantage of. I read that many people feel this is an invisible disease and that it is so frustrating when people don't believe how crummy you feel because you "look good". When he said he couldn't work and couldn't help with the house, kids etc I tried to just support him and work harder. It was when he joined a running group I got mad. I know exercise is important for health but if he can run he can load the dishwasher. I was even fine with him not working although it did put a ton of pressure on me.

    His behavior during my health scare though was the last straw. In sickness and in health works both ways. Spending a night in ICU alone!!?? I would never have let that happen to him.

    I am a sucker and a doormat and it stops right now.

    Good luck to you. I hope your health improves.

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    • Posted

      I understand where your coming from. But when I have an off day I can't move nor breathe I'm basically on my own that's why I started to reach out to others who are currently or have had the battle with nasty illness. I'm planning on driving myself 7 hours to Walter Reed Hospital/ John Hopkins Hospital to get more doctors to take a chance on me. And of course ALONE on this journey as well. But then my husband throws a fit if I don't tell him what's going on with my health. It's like a no win either way. Sometimes I just want to go to sleep and not wake up. Getting tired of the fight within my own body as well with my husband and family ( family are none believers of my illness even though specialists have told them it's real)

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  • Posted

    I sure hope you find better men to share your lives with. I consider myself very lucky to have such a good wife. I do work 12 hour days but often have bad days. She is currently going to school so that she can get a better job just in case I go down but I will work until I just can't go anymore.  You don't need those guys if they disrespect you by putting your needs and health aside.     

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    • Posted

      You are so right. But my issue is loneliness I'm to far gone in health wise to try and leave I can't work I have no insurance nothing. And to be honest I don't want to die alone . I know my husband can be a jerk and it's hard for him to understand what I go through . By no means am I defending him. He does have a pure heart and can't handle seeing how I get treated most of the time by ER doctors and or my specialists my own mother can't handle it either. He means well and takes care of me at home when he comes home from work. But hospital's nope he can't he tells me it kills a piece of him every time I go down and he doesn't want me to see him cry. I don't know anymore on what to think or do. I'm just glad I have people who understand what I am going through

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