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Posted 1/7/2013 1:32 PM (GMT 0)
I have been sick for several years and was diagnosed with lyme in the summer of 2012. I was treated briefly by my PCP with treatment ending in September. I am STILL waiting for my appointment with a lyme doctor. I try really hard not to complain about my symptoms but some of them are hard to hide such as the joint pain and headaches. I have noticed that my husband has become more and more indifferent to my health. He never asks me how I am feeling and if I say something such as, "my joints are really bothering me today", he doesn't even acknowledge that I've spoken. Recently on two occasions I was asked by people who I hadn't seen in a while how I was feeling. On both occasions my husband abruptly (and quickly) changed the subject. It's as if he won't even allow me to talk about it. Please understand...I do NOT walk around talking about my illness all the time. Sooo.....a part of me wants to think that he just doesn't know what to do or say so he avoids it completely. But I am left feeling that he doesn't care at all. It's really hard to get through this without a support system. Thoughts?
Posted 1/7/2013 1:48 PM (GMT 0)
Hang in there, Hishorselover, lots of people react this way, including my hubby. I know he cares - a lot - but talking about it bothers him. It's something he can't have any kind of control over, and yet it's what is making my life miserable. So the only thing he wants to do is to 'fix it'....and he can't. He has done great things for me, like being sure I can get to the docs and such, but as we all know, that's not enough. It just takes a long time to heal compared to other illnesses.

There's so little that anyone can actually do for us to help us feel better. I've noticed that the worse I feel, the 'farther away' my hubby gets emotionally and I know it's because it makes him very uncomfortable because there's nothing he can do.

It might help if you could get your hubby to visit the site "Lyme Spouse" (www.lymespouse.org/, as it's set up for those who have loved ones with Lyme to help them understand at least some of what we go through.

For you, is there a local support group where they meet face to face?

Other than that, I'm sure that there will be plenty of others that will post here with more suggestions - this is a very common issue.
Posted 1/7/2013 1:49 PM (GMT 0)
Unfortunately I think this is a really common reaction. I run into it all the time. Although I'm not married, I find that friends treat me the same way. In fact, up until I had an uncontrollable emotional breakdown a few weeks ago from trying to hide all my symptoms for over a year, nobody outside my immediate family ever asked me how I was feeling. Unfortunately, observing my inability to hold it together after a symptom got the best of me in public is what it took for them to realize that something is wrong and I'm not just exaggerating. Unless you are an award winning actress, you can't fake a breakdown lol. Although I hope that you don't get to that point.

Now all of a sudden they are researching Lyme, giving me contact information for other patients with chronic Lyme and suggesting all different types of treatments for me. I think a lot of the avoidance comes from fear. I know someone who would be able to identify a lot of my Lyme and co-infection symptoms in her child and it scares her to think that Lyme could do this to someone she loves so she doesn't want to hear about it. After all, if I'm at risk and developed this severe case, her family is also. We live in and frequent the same areas of high risk for tick exposure. Sometimes denying it or avoiding talking about it is a coping mechanism.
Posted 1/7/2013 2:04 PM (GMT 0)

Hi hishorselover,

I would suggest to you to just talk him about it, ask him, confront him (in a soft way), just bring up the subject and discuss it. If you bottle up these feelings, it'll just get worse for you - he's your partner, who needs to know exactly how you feel.

Explain him you feel hurt, and tell him what you would like him to do. A lot of partners don't get it just by giving hints. Don't put the blame on him, try not to say things like 'you hurt me', but rather 'I feel hurt', so he doesn't feel attacked  smilewinkgrin .

I try to apply what I learned in Non-Violent Communication (M. Rosenberg) - lol - does it show?

It's a hard journey... especially when you feel the support around you fading away. Try to keep the communication between you and your hubby open and without frontiers. (me and my hubby are not all the time good at it, especially not at this moment... it asks some effort, but I loose so much energy when communication is down...)

Good luck!!

Post Edited (MarieLS) : 1/7/2013 7:09:31 AM (GMT-7)

Posted 1/7/2013 3:22 PM (GMT 0)
I remember the day I sat down with my husband said to him flat our "I think there is something really wrong with me." Up until that time, I think he just kept thinking it was minor complaining.

It is difficult to explain to someone how you feel with lyme. It is a strange disease as you feel so different everyday, or at least I did.

I have learned that I am the best one to listen to myself. Others do not want to hear your problems so I pacify myself. The idea is to listen to your heart and your gut. No matter what anyone says, you know how you feel and only you can fix it.

Wishing you the best.
Posted 1/7/2013 3:36 PM (GMT 0)
Lol - what a good topic. I BLEW up at my hubby just two nights ago for being a jacka**. I spent the better part of an hour telling him how little I felt he cared about me and how he only cared about one thing...cough cough wink wink nudge nudge. And yes, granted I haven't been that attentive to his *needs* since I got sick in October but I felt a big part of that was why should I be... when you are acting like you don't care.

He is a joker and when I first started feeling ill he told me maybe I was pregnant, and then the next time maybe I just need to drink more wine...that is when I completely stopped telling him anything, about how I was feeling etc., what herbs I was going to take.To be fair he doesn't understand being ill. He has been sick once in the 8 yrs we've been together for a whopping two days. He hasn't been to a dr in probably 10 yrs b/c he thinks they are all full of poo (guess he was right on that).

I know he cares about me, he cooks me dinner everynight and has made it a lot healthier since I got ill and he lets me watch whatever I want on TV. But still sometimes he aggravates the poo out of me!!! Mainly I think b/c he doesn't understand at all.

Posted 1/7/2013 3:42 PM (GMT 0)
I'm so glad to hear that I'm not the only one who has experienced this. My husband and I don't have great communication to begin with and were very close to divorcing several times in the past two years. I honestly still don't know where our relationship stands....

I am very fortunate that I am able to keep up my daily activities and that this disease has not caused me to be disabled. With that being said, I think it makes it even harder to feel validated.....I keep doing what needs to be done including working a full time and a part time job plus being the mom of 3 teenagers. I keep going because I can and I HAVE to but I think he mistakes this as me being okay and not sick. I don't feel that people who are married should have to go through life feeling alone but I can't make him understand or respond either.
Posted 1/7/2013 3:58 PM (GMT 0)
Oh, Opugirl... I think we must have some kind of parallel lifes - lol

My husband is the Joker too... he's never tired, he's never ill...

I blew up on him all weekend... saying he doesn't show me enough attention.

Sometimes he gets it, when we sit together and I explain him calmly. Then we're ok for a few weeks, then he forgets again, etc... But as soon as he feels attacked, he attacks back at me.

People that haven't been ill can't understand, but they can at least try???

Heads off for managing such a bussy life hishorselover!!


Posted 1/7/2013 5:47 PM (GMT 0)
I am very lucky when it comes to my hubby n LD. He wouldn't know me if I didn't have it! I meant him when I first learned I had it. Our dates were talking and giving him sites n things to read up on LD! I told him he had to understand to the best of his ability on what I am going through, before I even considered dating him! He went through the IV treatments and other treatments, doctors n the disappointments with them, the depression, the anger , etc, all those good things we go through. He hung in there n was very good with me! He stuck beside me through it all. He did his best n took care of me! I was so blessed with him.

He took me in when I lost everything due to LD. O I get on his last nerve at times lol, but he just walks away n comes back later n says r u done with your lyme temper yet? He holds me when I am really depressed n sick. I am very very blessed with my hubby n him trying hard to understand LD
Posted 1/7/2013 7:30 PM (GMT 0)
I know what your talking about before I got diagnosed with lyme my hubby told me some hurtfull things> like your really bumming me out

because you never feel good anymore.. I kept going to the Dr. to find

out was wrong with me and he said,"how much are you gonna spend

going to all these DR.  He was all about the money. The last thing

he told me was I lost it there was nothing wrong with me.  He was an

a****hole and I remind him of it everyday.....I didn't want to go back

to work until I found out what was wrong with me, but he made me..

I had to pay for all my Dr. bills I had anxiety really bad and I cried and cried at work and then I would make him come out and see me.  and he

would tell me your alright.  So I know they can be A****holes......

Better know that He knows I have Lymes.....

Posted 1/7/2013 11:21 PM (GMT 0)
Yep, when I got sick with lyme, my husband couldn't handle me being sick.   He yelled at me all the time (this was before I got diagnosed), a very long 5 years.  I couldn't take the stress anymore so I asked him to move out and he finally did.  I wanted a divorce and finally got one. 

When my ex-husband was sick with crohn's disease, I took him to several different doctors, spent endless days in the hospital with him, took care of him but when I got sick, he was not there for me and it really, really hurt.

Today we still talk once in a while but now we live in different states. 

Again, this was my choice to have him out of my life due to all the stress.

Denise

Posted 1/7/2013 11:45 PM (GMT 0)
I was in a serious relationship with a man and the lyme was what caused it to end. He couldn't understand how different things could flare up all the time and had this crazy notion that if we didn't talk about it, I would forget about it and get better. Meanwhile I was holding it in all the time and hating him for it. He didn't understand that his slight cough would put me in bed with a high fever and being ill for weeks because of a weakened immune system. Finally when I broke up with him, he became interested in the disease. It was a little to late for me. I'm sorry to all who have to deal with those partners that don't understand. I wish you all the best.. And remember, the rest of us are always here to listen!!!
Posted 1/8/2013 1:08 AM (GMT 0)
Ahh! Lots of the same here! My husband didnt understand for a long time. I was in pain, confused, scared, and quite irratated most the time. I was in a why me? state for quite some time. He didnt get it. Joker type too. But in an almost passive agressive way. He's a good man. Works hard to make sure bills are paid, house is clean and toddler is happy when I was slacking. It bothered him the most when I didnt feel well enough to work but felt well enough to sit on the computer half the day researching LD. I can understand that. I found if I got him involved in it he began to come around. I had him watch Under our skin with me and had him come to my Dr.s appts. Now I will intentionally ask him to google a symptom or method that has to do with LD so he feels more involved. And I let him know almost everyday I appreciate him sticking with me through thick and thin. Good Luck everyone! I really feel its tests like these that show you what a persons made of :)
Posted 1/8/2013 1:31 AM (GMT 0)
I try not to complain about things, I try my best to not say this or that hurts. My husband gets mad if I
don't tell him , he wants to know, the only thing that really gets me is the doctors have him convinced I have cure myself of Lyme. That me being sick is from something else, so if I mention Lyme he said it's not lyme.


So he thinks I have this autoimmune disease where these great doctors are going to give me this super pill and I will be back to normal. I am sorry , but I still have Lyme, the same thing I started with , I still have. I don't care what the doctors say. I think a man want to fix things, they don't understand when they can't just fix you. My husband feels angry this has happened to me, more angry than I am. I tell him all the time, I am tough, I can get through this, but a lot of the times I just say that , so he doesn't see the pain. I try to protect my family from how bad it gets.

I rest a lot, and with Lyme , you have to take breaks, and recharge your batteries. I learned If I do to much, I suffer greatly. My family tries to be helpful, but they don't understand, and I can't expect them to. I feel frustrated most of the time now, like I am living someone elses life, and just trying to get though each day.

Maybe you husband doesn't know what to say , so if he ignores it , he thinks it will just go away. It won't but people have all different ways of dealing with things. I know what lyme does to our bodies, I can't even thing about what the other person feels like.
Posted 1/8/2013 3:17 PM (GMT 0)
hishorselover,

I can completely relate to your situation with your husband.

I had been experiencing bad health for years, trying this diet and that diet, this routine and that, to no avail of course.

The doctor couldn't find anything wrong, so it looked like I was just a whiny complainer who was never happy or satisfied.

We had a great marriage prior to that, but the illness took it's toll, and I eventually divorced him because he wasn't supporting me emotionally.

My libido disappeared, so he thought I wasn't attracted to him anymore. I questioned my sanity as well, wondering how this had all happened.

Then, over time, we managed to communicate better and he was able to understand what I needed from him.

We are actually back together now, and learned that I have LD after we reconciled.

So, it's nice to know that I wasn't crazy for all those years, but the misunderstandings and blame for being sick can really cause problems.

I find it to be extremely difficult, as a woman, to ocmmunicate what I need when I'm sick.

Men are not intuitive nurturers, and it does affect them when they can't fix things.

We're doing better as a couple now, and I have to be clear with him in telling him what I need.

He thinks he has to make me better, and is shocked when I tell him that I just need lots of hugs.
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