Anyone else spouse having a hard time?

My husband is having a hard time believing what is wrong with me. We have went from Fibro to polysistic cyst to my primary thinking ms or other muscular-skeletal diseases. I have thought Lyme for a long time and have tried to get this option explored more. I was happy and healthy before we stumbled in a nest of ticks. I am only 27 but he keeps saying "You are getting older, of course your knee is going to be stiff, your tired cause of the kids, etc". He just says he doesn't want me to have anything. He is very supportive and is accepting that I am on the antibiotics, that the house isn't always spotless and goes to every Dr. appt that I have had. He is still hung up on the fact that I had a negative Elsa test. I will get all of my other test results in Sept (western blot, cd-57). My LLMD said even if they was negative he was convinced. I don't think that my husband will accept this. I have tried to get him to look at facts, etc and acts like he is in denial.

Has anyone else had this? Sometimes it feels lonely cause I feel like it hurts his feelings when I complain about my neck or the muscle twitches, etc. This is all new to our family.

It is very hard for any of us or our spouses to accept that we have chronic illnesses. It changes absolutely everything about our lives - how we live, what we do. I think it would be especially hard for younger people to accept - it's a shock. Try to take care of yourself. If your doc believes you have lyme, maybe he can talk to your husband.

Your husband just wants the old you back. It is hard for anyone's spouse to deal with a loved one getting sick. I went through this with my husband and I'm not ashamed to admit that in the beginning, he didn't believe how bad off I was. He does now though after seeing me struggle to walk most days. It is sad that the tests are so inaccurate. If they were more accurate, then most of us would not have to go from doctor to doctor "looking" like we are hypochondriacs. Just give your husband time. He will come around eventually and if you need to vent again, come here because we all know what you are going through.

rasputin26 said...
My husband is having a hard time believing what is wrong with me. We have went from Fibro to polysistic cyst to my primary thinking ms or other muscular-skeletal diseases. I have thought Lyme for a long time and have tried to get this option explored more. I was happy and healthy before we stumbled in a nest of ticks. I am only 27 but he keeps saying "You are getting older, of course your knee is going to be stiff, your tired cause of the kids, etc". He just says he doesn't want me to have anything. He is very supportive and is accepting that I am on the antibiotics, that the house isn't always spotless and goes to every Dr. appt that I have had. He is still hung up on the fact that I had a negative Elsa test. I will get all of my other test results in Sept (western blot, cd-57). My LLMD said even if they was negative he was convinced. I don't think that my husband will accept this. I have tried to get him to look at facts, etc and acts like he is in denial.

Has anyone else had this? Sometimes it feels lonely cause I feel like it hurts his feelings when I complain about my neck or the muscle twitches, etc. This is all new to our family.

It's unfortunate, but quite common, that a spouse, or family member, have a hard time believing this disease can be so devastating. I hate to mention this, but there's a fairly good chance you could pass this disease to your husband. There is more and more evidence coming out that says Lyme disease can be sexually transmitted. Not everyone agrees with this, but recently there have been some scientific articles that have come out that are pretty convincing that this disease can be transmitted through sexual intercourse. If your husband got this disease (God forbid), he will certainly change his views on this real quick. I seriously pray this doesn't happen.

Your husband ought to do some research on this disease and maybe it will help him become a believer. By the way, Lyme disease is a clinically diagnosed disease and there are no tests at this time that are 100% accurate. The only test that comes close to being accurate is the Western Blot test by Igenex, but even this test is not 100% accurate.

Gary

Simela said...
That's a good point, it is quite possible to pass on lyme to your spouse, and I did run into this issue through my own research. The problem is most people don't even know they are infected. A doctor wrote an article saying that it takes him longer to treat spouses than single people and he presumes that couples keep infecting each other.

What bugs me the most is that my husband is so introverted about everything. Guess what I found out tonight? He's told me that when he was 15, he got bit by a tick. I asked him how he removed it and he said that he burned it with a match. He will get tested this mo, and if he is +, we'll never know If I got it from him or he got it from me.

I wonder how many out there are in this situation!

Probably more that we'll ever know. My dad died 22 years ago from ALS (Lou Gerhig's Disease). Back then no one associated ALS with Lyme disease, so he was never tested for it. We'll never know if Lyme disease brought on his ALS or not. What's even more interesting is, my dad was born and raised in CT ("tick country"). Both of my previous LLMD's suspect I got lyme disease when I was given a blood transfusion from a botched surgery. But now with what we know about ALS and Lyme disease, and knowing how this disease often times spreads from one family member to another makes me wonder...

Gary

Willowrose, I certainly can relate to your post. I have been re-married for nearly four years and in that time my new husband has been ill with everything that comes along plus has developed arthritis. Even though we're "older" it seems strange to me a man who was in perfect health can suddenly start downhill. I am recently diagnosed so I'm hoping in the near future he can/will get tested. I have been literally preaching that anyone who thinks the only way to get lyme is thru ticks probably believes in Santa Claus too. I think all the propaganda (mostly by CDC-my opinion, of course) about tick bite and nothing else could cause lyme is a cover up to avoid mass hysteria. My most-used comment is: "You can't tell me if an entire family is infected that they all got bit by a tick" I'm also of the belief that you can get lyme from your pet.

So to keep on subject about spouse support, mine is introverted as well. He doesn't want to read but will listen to what I tell him. We recently lost our business and the last year was more than stressful for me. In that time I really, really went downhill and knew there was something going on in my body. I ended up demanding my doctor treat me for lyme, so here I am. My husband doesn't expect me to be up cleaning and cooking and gardening every day and acts like he believes I am ill. Last night to get a point across, I told him that I had a bacterial infection so it would be the equivalent of a huge gaping infected wound without the pain. I am blessed that I don't have the painful joints, only severe CNS.

For those of us who have lost loved ones to some named disease, was it really what was diagnosed? Thank you for all your posts.

Hi, I am new to this site but I can sure answer this question I have had lyme disease and all co-infections for 14 yrs. I will tell you when after 2 yrs of not knowing I had to leave my job because of all kinda weird symptoms.(will post my story later been to sick to do it as it is quite long).

But anyways in the begging my husband was quite upset with me first he told me if I had wanted a vacation from work I should have just taken it, that hurt know one not even the Dr I was going to believed me she told me to go to a physchrist(spelled it wrong ).

anyway then he saw me get sicker and sicker he really just thought I guess that it was in my head or wanted time off. Then I got dignosed 2 yrs later after the bite. and he was ok now we'll do the bicillian shots and zith I think I was on? too long ago to remember and she'll go back to work :( wrong.

He told me and Ill never forget don't think I'm sitting in the house just cause your'e laying around being lazy. anyway over and over he just coudn't get it. even when I did my first IV line. We both thought instant cure wrong .

over the years he has finally excepted this disease because of what he has seen happen to me . I am not the person he married it has taken a toll on both of us. but around 5 yrs ago he started going to my Dr appoint with me and he found out I really had late stage Lyme.


I am (again when I post my story I will tell more just look for mainegirl) thats me. I also brought home one of the videos from the libray called under my skin. which he did watch with me that really open his eyes maybe you could get your husband to watch that with you.


actually what I did, it sat around the house for awhile and finally one night I said let's watch a movie so we got comfortable in bed and I put it on . Ha He had to watch it after the first 5 mintues he was intensely watching the movie going oh no look weve been through that he got done watching it and immediatly looked up everything on the internet we had gone through over the previous yrs.

so there is hope I am housebound right now and have ahome nuse but he goes to all my Drs appots with me and does the housework and takes care of me. He also does most of the cooking.

He has changed and really does know what lyme can do to a persons life. keep the faith your husband will eventually come around. maybe you could get that movie and just pop it in one night. or maybe just get some pamphlets and leave them around the house.

I hope he understands sooner then my husband did. But there is hope. oh how about bringing him to a support group. I did that to. I mean when you here 5 to 15 or more people talking about the same symptoms that in itself tells you something. I hope this helped you and If you need more insight I'm here along with everyone else.

GOD BLESS marlene and yes yes yes it is very very lonely disese and does he know you don't always show a positive result. thank God mine has always been positive and lets pray yours is. I think we can all relate to each other here this is a great site. people here seem tobe really nice and helpful and supportive and thats what I needed.

Hi, I know it's hard to take it when someone you love won't even believe you. You definetly have alot going on in your house with kids and all . I'm so sorry you have this. I can't even imagine trying to take care of children. I found a support group because my Drs bulletin board had one on it.

But you can google in lyme support groups and also put where you live and something should come up. If I can be of more help let me know I have dealt with this so long as probley most of us have. I know as I said above about being alone I think alot of my depression has come from being so alone.

Marlene GOD BLESS

Thank you for all the replies. I'm sorry that alot of us have a hard time esp with the spouses understanding whats going on. I have been reading a book called "The Lyme Disease Solution". I have it almost finished and I finally got my husband to read the first 3 chapters. He actually confided that after reading it, he has about 75% of the symptoms and finally said "Maybe I'm not supposed to feel this way at 30 yrs old." And he wants to talk to the LLMD this Sept. Me and my whole family was bitten when we went hiking on Fathers Day 08. So I'm not sure if it would be because he was bitten or from having sex(if the dr thinks he might have it). I feel like he has finally accepted that its real and I feel he believes me instead of also telling me "Its my age, etc) so I feel really relieved.

My 7 yr old and 4 year old was also bitten on the same trip. My daughter has been on several antibiotics due to ear infections and my 4 year old son has no signs. I did mention this to the llmd and he didn't say anything about my family, just me. What should I do?

I can't imagine having a spouse who didn't believe what I was going through...I feel for you. With all of the judgment I went through with doctor after doctor, prior to finally being diagnosed, and even some judgment from family and friends, it's hard enough to constantly wonder if people in my life believe I'm really sick. I have a lot of paranoia around that and have to work daily on letting it go and not allowing it to bother me...so I can imagine having that feeling pretty much in your face every single day has to be so hard...

I hope you trust your husband enough to be able to have a serious talk about how his assumptions are effecting you emotionally and mentally...and how important it is that he support you by first believing you and believing in your treatment. He is your number one support system and you need him! Lyme is so all-consuming and it's hard enough to deal with all the physical and mental symptoms without having to worry about whether you're illness is effecting someone else...

My relationship of almost six years ended a year ago, two years after I got sick. My ex-boyfriend was VERY supportive the entire time I was sick, advocating for me, taking me to doctors, and seeking out treatment for me...and it was STILL very difficult on our relationship. Lyme can be so isolating and limiting...and even though he supported me 100% and did everything in the world he could for me, I still found it hard to be in a relationship because of the guilt I felt at not being able to give 100% as I used to. I remember thinking (often) that I just couldn't do it anymore...I couldn't handle the pressure of feeling like I needed to please him and be fully-present in the relationship when I was barely existing in my own life.

I truly wish you all the best - any kind of illness can be tough on a relationship. Maybe he'll end up finding his own support system to be able to learn to cope with what's going on and how he can best support you. Have your or he watched Under Our Skin, the documentary that came out last year? Learning more about the inaccuracy of test results and all of the political issues going on with Lyme may help him to understand the complexity of the disease....

GOOD LUCK TO YOU and all the best,

Rachel

Denise,

Just wanted to follow-up on this message and say thank you for sharing...very well said and I empathize with your feelings, although I wasn't married...but I know the feeling of having anything more than taking care of your own immediate, selfish needs be just too much to even think about...and then the guilt of not fulfilling someone else's needs or desires just tops it off. I know for me, it's very hard to express the complexity of the feelings I go through, and probably impossible for anyone else to understand unless they've experienced the pain, desperation, loneliness, isolation, and total lack of hope themselves... When I'm at my worst, I can't even think (and probably don't even honestly care much) about more than eating, sleeping, and going to the bathroom...and sometimes those basic needs for myself aren't even met.

Aw...thank you Mamyou... I feel your frustration, but also a sense of relief that I don't have to deal with "that" - even though I often wish I did have someone in my life to share each day with... I suppose there are huge positives as well as negatives about sharing this journey with someone who doesn't, and can't, fully understand.

40 years is a very long journey and it must be HUGE to finally feel like you're on the right track with a diagnosis, etc. Often when I'm at my worst is when I get the influx of suggestions from my doctor, nurses, and even family members about what to eat, what supplements and/or medications to take, etc...but at the same time it's during these times when I can't even get to the grocery store to buy food, nor can I get to my kitchen to make food...so I eat whatever I can get my hands on quickly and whatever tastes good (comfort food). When I'm *that* sick, I just don't care...I will do, or eat, whatever I can to feel better in the moment. Sometimes I know a warm shower or hot bath would do me well, but it hurts too much to stand in the shower or lay in the tub, or even sit there waiting for the tub to fill...Hell, even sitting on the toilet can hurt soooo bad!!!

And some days I just wish there was someone who would just LISTEN to my endless complaints (!!!)...which is one reason I'm so happy I've found such a great forum here...and I would love to listen to others' too, so here we find ourselves... :)

madrivergirl30 said...

...but at the same time it's during these times when I can't even get to the grocery store to buy food, nor can I get to my kitchen to make food...so I eat whatever I can get my hands on quickly and whatever tastes good (comfort food). When I'm *that* sick, I just don't care...I will do, or eat, whatever I can to feel better in the moment. Sometimes I know a warm shower or hot bath would do me well, but it hurts too much to stand in the shower or lay in the tub, or even sit there waiting for the tub to fill...Hell, even sitting on the toilet can hurt soooo bad!!!

I have also been infected a little over 40 years - mainly ignored the symptoms until I just couldn't go on - that was in 1988. Being a single mother is why I pushed so hard for so many years. I had a major relapse a few times in my life - making me bed-ridden for several months at a time, but the last time I had on of those major relapses - November '07 - Hubby & I were traveling for his work. I had to come home & find a way to function on my own as well. Unfortunately, like you I had problems getting out of bed to feed my face, so I literally emptied out our pantry!! I would eat whatever I could eat with little or no preparations. A trip to the grocery store put me back in bed for the rest of the week. I was miserable & kind of grateful to be by myself - no one else to tell me to get up, or to shower or anything!! I didn't have to concern myself with anyone else, for any reason - no matter how bad I smelled.

This forum has kept me going looooonngg after I would have normally been a screaming meemee!!!