Fed Up Husband Who Seems Uninterested In Diagnosis

[Kris4444]

Anyone one else?

I know this has been going on for years and I know that the constant doctor's appointments and diagnostics and the neverending road to no where is getting old....BUT...we are finally seeing light at the end of the tunnel. We have a new path to follow and NOW he is going to shut down on me???

I asked him to watch a couple videos regarding MCAS. I fit the diagnosis so well! I showed him the biopsy report from my colon and how it may relate to a mast cell disorder. He played with his phone and then said everything they said made no sense to him.

I have lost so many friends over this not to mention my LIFE and everything that I enjoy. I have 30 days to figure this out. I would think that he would be onboard with this but clearly he has had enough. I have a doctor's appointment Monday. I want to have info to talk to him about so that we can get some questions answered that we discovered at Mayo. I wanted his opinion, he has been through it all but he has lost interest, he is done with this whole thing.

Has this happened to you? Am I obsessing and need to just quit? I feel like I am finally getting somewhere and I need his support but instead I feel like I have done nothing but disappoint him and that even though he agreed with taking a medical leave I think he is upset about it.

Sorry to vent. I just feel really alone right now.

[Chaos]

Believe me, I hear you and know how hurtful it can be when you feel like your spouse isn't interested in what you're going thru, or isn't as excited as you are about a new treatment option you see opening up in front of you. That's when I'm really really glad I have a place like this I can come and be with people who "get it".

That being said, I also have to keep trying to put myself in my husband's place and see things from his perspective. I keep wondering if the situation were reversed if I would be nearly as supportive and patient and understanding as he has been for the past 3 1/2 years. There have been a lot of days when I was the one who was sure this must be all in my head and I was just crazy, but he was the one standing by me, saying "Oh No! I know you too well to believe that! We're gonna keep searching til we find the answer." So when he has those days where he kind of shrugs off my rambling on about whatever new research I'm doing, or what my latest ideas are about treatments etc....I keep trying to remember those other times and remember that we all have bad days and sure enough, pretty soon, he comes around and is back to being supportive again.

Also, since he has no medical background and it's not an interest of his at all.... he really doesn't understand most of what I'm saying, so it's NOT an area that he's generally going to be very excited about listening to a lot (at least for my husband). So, I try to minimize talking too much about it and try to find other things to discuss whenever I can. I know this has totally taken over my life and it seems like it totally consumes so much of my life and thoughts, and has in many ways taken away so much of my life...but I still don't want it to be the only thing I ever talk about with my family and friends- who aren't fellow POTsies. So I really make a concerted effort to find other things to talk about and focus on when I'm with other people.

When my doctor suggested a medical leave in January 2012, my husband was also supportive. In fact he was the one who really pushed me to stop working in order to try to get the symptoms better under control. They thought 8 weeks would be a good time frame. Imagine all our surprise now that a year has passed and I'm still off work and can't foresee going back anytime soon. I'm sure my husband has had many second thoughts about his encouragement but while he's made a few comments that I've found hurtful, by and large he's been very supportive. I think one of the things with having that "sympathetic overdrive" that so many of us have is that our nervous systems are hyper aware at many many levels and that includes picking up on perceived insults/slights etc. So personally, I always have to be doing a lot of self talk to keep that stuff in perspective.

Good luck with this! Sorry he's being not so understanding today. Hope it's better in the days to come.

Hugs!

[Mydoggielovesme2]

Kris, So sorry you are going through this today. Please know you are not alone. I would bet most of us who have been dealing with this illness for sometime, have been through something similar. This illness is so isolating. No one can truly understand what it's like. Not only for ourselves, but also our spouse. My husband has told me that for him, it's scary. He wants to fix the unfixable. Every time I want to try something new, or try another Dr, he gets frustrated because he's afraid of the let down. Not only to me, but for him also. I guess we have to try to see things for one another's perspective.

I wish the very best for you both. Hang in there.

[Kris4444]

Thanks for the replies. I am seeing a therapist and she likes to point out how different men and women are. Men need to fix things. So if I'm broken, he needs to find a way to make me better and he can't. I get that and I do feel for him. We went through a time early on in our relationship where he had a serious medical condition. Part of me wanted to run but the bigger part of me, the part that my parents instilled in me, said to help him and so I did and I have never regretted it. Fortunately for him his illness was cured by a surgery where mine seems to continue to perplex even the best of the best doctors. How can I possibly expect him to get it? I can't but I guess I hoped for a little more support.

Like you said, it's "today", today he isn't being open to suggestion, today he doesn't want to deal with it. Tomorrow is another day and hopefully a more positive one for both of us. I am sure he is scared, I know I am. Guys don't like to admit to that so instead they act like jerks and that is who I am dealing with today. But it's just today, tomorrow is another day. I guess I just need to stay positive and try and leave the diagnosing to the doctors.

[Joann]

You are right, guys don't know how to deal with it. My husband ignores this also. If he can leave to avoid dealing with it, he will. I used to think he doesn't care, but some people told me he actually is quite worried but doesn't know how to handle it.

He does not go with me to doctors appts. I wish he would, but I have learned this is his way of dealing with it. When I really, really need him, he comes through. Takes care of groceries, takes my daughter to school. He has told me not to worry about work or anything else. But he is not my go to guy if i need comforting or talking, he can't do it.

I guess that is why we have this site, so we can talk to others that can understand. Good luck and hang in there

[Katybug]

Kris,

I'm not married but read "Men are from Mars, Women are from Venus " many moons ago so I could be more repayable with the men I worked with. It is an enlightening book. They process information very differently and then express themselves very differently. Often men need to silently think on information, facts, and feelings before they are ready to talk about any of it. (Of course not all men but generally.) This stuff is overwhelming for us and we're living it, I would think a spouse or significant other would need time to adjust to each new stage of the illness.

[Kris4444]

I agree that this site is a great place for us to share what is going on. There aren't many people who want to hear your issues over and over again. I feel bad for my husband that this has gone on for so long.

Joann your comment reminds me of what my friend (who happens to be your namesake) has said to me in the past. She said that men aren't wired to listen to us vent because they want to fix things. She told me to call her when I just want to complain or be a female dog. She gave me a doll that is handmade that you take by the legs and smash into whatever you'd like in order to feel better lol! She is on my bedside table at all times.

Katy I have also read those books as well as the one that came after which was also very enlightening and we have passed it on to friends and other couples. I get it for the most part but it's still disappointing that my rock has seemed to disappear.

I don't have many friends left. This illness has taken so much from me and now I feel like I'm losing him too or at least his understanding.

[E Soskis]

My suggestion is to keep open the lines of communication - tell him that you feel like you are losing him - try and elicit an honest two-way discussion about each others feelings and emotions. My experience has been that men want and need a lot of attention. As long as a man feels he has support, security, and lots of attention, he can deal with almost anything. The only way you will find out what he is lacking is to hopefully communicate openly with him. I bet that he has a lot of underlying fears about your illness - especially concerning is that he may lose you as a spouse to this disease. It kind of also sounds like you both are afraid of losing what you have together - I hope that open dialogue is enlightening to you both and will bring you back together on the same path. Chronic illness is difficult for everyone involved - friends, family, and coworkers. I've had to swallow a lot of hurtful things just to maintain relationships - I'm sorry you are having so much difficulty - this forum is a great place to vent and share insights and insecurities.....

[Kris4444]

Thanks. I'm sure there are underlying fears for him. Communication is so important. We are both type A personalities and still trying to figure out how that is going to work lol (we have only been married a year).

I appreciate all of the replies. It's nice to have a place to vent and people who really do get it.

[lissy]

We as women try to be as active and positive in our conditions and obsessive at times and if its Not sports or other things men find interesting they are gonna lose interest lol they have shorter attention spans, not that they don't care they just show their love in manly ways...They don't want us ill and its frustrating and men are way different, alot of times they deal with illness on a daily basis and learn to suck it up to support the family, sometimes to the point of neglecting themselves. So in alot of our cases we search and search uncovering the potentially new cause and in their mind its like "Just enjoy your life find a way to live with it " and accept this is the new you...I think when we search they see it as not accepting reality..but we see it as a potential way to be cured and have our life back.

So those are just my thoughts and opinions.

Balancing it out not only talking about illness is important, went through that myself!

Almost 8 years married 5 years in June got ill. Husband not medically knowledgeable or interested in anything except how do I feel one day at a time;)