I dread opening a can of worms but I’m wondering if I’m alone in the strain Chiari puts on a good/healthy marriage. Let alone one that’s disinigrating. How does a Chiarian save a marriage when their spouse believes it’s all up to the Chiarian do all the work - emotionally, intimately, physically, and spiritually? Am I wrong to believe limitations don’t remove the ill from responsibility but definitely require some changes of thought on the part of the well spouse? When there is depression, chronic pain, etc., ought there to be an allowance for the one ill? Is that not part of the marital vows? When there is a loss of control - tempers, frustration from the stress of dealing with the crazy up and downs of ACM added to that marital discord, should not the partner, especially the one who declares unfailing love, actually be manifesting that?

Or am I believing an ideal? Are my expectations and hopes for support too great?


Debbie - I think you’re right on. Marriage is for better or worse and this Chiari stuff falls in that worse category. I’m lucky that my husband helps me so much. He does all the hard stuff like vacuuming, making the beds, cleaning the bathtubs, and even empties the dishwasher for me; I know I’m lucky to have him. He never complains about any of it; just does it and leaves me to do the things I can. I do the cooking, dusting, laundry (although he carries the clothes to and from the laundry room for me), and whatever else I feel like doing. I’m lucky that he also keeps track of my medications and doctor visits too. I don’t know what I would do without him. He hasn’t always done all these things and I sometimes thought he made comments which made me think he thought I was being lazy when I stopped a lot to rest. After I had worked at the Pentagon all day, it was hard to have energy to do stuff at home. Since my diagnosis in 07 and since he has learned so much more about Chiari, he doesn’t question me. He for years did some of the harder stuff for me because he knew I had trouble with it. Since we don’t look sick, education of our family members seems to be the key to more understanding. My husband and I attend all the educational seminars that the Wash DC cchapter of the Chairi Syringomelia Foundation has at a hospital near us. Maybe you could find something like that. And…no…my husband is not available. All my friends are already in line for that…he is one in a million and I know I’m lucky. Hugs Shirley

Hi Debbie:

I totally understanding where you are coming from...Just this past w/e I had family in from out of state and my niece asked.."Auntie, aren't you all better now??" I have decompression surgery 2.5 yrs ago....I tried to briefly explain that there is NO CURE..only I still have some problems..

My hubby , too, thought it was going to be a cure -all...At times he gets resentful if he has to 'pick up the slack' so to speak, if I am having a hard time.

During marital arguments he use to throw up in my face "All your 11 surgeries....the bullshit I had to put up with!"..what spouse counts the # of operations the other has..MINE!!! LOL However, after having a LONG heart to heart he gets it now..or should I say he tries to get it...

Hubby tells me I have to tell him what I need, he is not a mind now..I ASK..sometimes I have to ask a few times..b/c he 'forgets'..but all in all when i tell him i am having a bad day ,he will step up to the plate.

Trust me, Carla, Abby and Susan have listened to be 'go off' about him!!!! But honestly, I think a good heart to heart and saying your needs and feelings is a has helped with us, anyway.

good topic by the way!!! Thanks..WELCOME TO THE FAMILY!!!!!!!!!!!!!!!!


Thank you ladies for the support. My husband is good about picking up some of the slack. Which does help, but hurts at the same time. I’m very organized, kids have chores, monthly menu, etc., when the kids don’t do their chores I enforce the “law”, he helps them avoid it…by doing everything for them. He believes this speaks love to me rather than that I feel like he’s robbing the kids of valuable work ethics all so he can say he did the dishes because he loves me.

I would much rather that he be researching with me about Chiari. That he’s up on the latest news and tests and such. That he would be helping the kids understand. I have shared this with him in several heart to hearts. He says he’s praying for me to be whole again so we can resume a fulfilling marital life (sex). Believe me that just screams to me sex is the end all. Yes, I know he’s a man. :slight_smile:

I need to buy all those recommended books. Thanks for the advice. The ear.


Well, in 3 days I will be heading up to Milwaukee to have testing and meet with Dr. Heffez. My husband will not be there. He hasn’t even talked to his boss. I told him not to worry about it I know where I am. How do you say you love a woman and will do anything for her and on one of the most important and possibly shocking days of her life you “can’t look a gift horse int the mouth.”. Sure, OK, I gotcha this is just my brain and brainsurgery well be discussing. But what do I know.

Thanks thanks for the advice and encouragement. This is a brand new job for him. He just resigned as a missionary. My health. More than that but that’s the front reason. I’ve always felt that he would do more for anyone than me. He was asked to take a day off by church to take the kids to a competition. He said he would check with his boss. Its like my imagination runs wild and can’t see all he’s doing for me. He’s clueless.

I do have a friend going with me she lives in WI. But ill be driving up on my own. I guess I better deal with the reality of that. As I don’t see it changing soon.


At first my husband was in denial, but after some Therapy I have been able to explain my feelings better, or maybe it was when I had the blow up and all my feeling came pouring out uncensored or held back. Either way he is VERY understanding and goes to every appointment. He is even taking a week off for my surgery, because it is unpaid that is about all we can afford. I have my mom, mother-in-law and father-n-law who are all helping too and one of my very dear friends, like a sister, is also helping too. I am so luck to have these people in my life. As for the "wifely duties’, my husband doesn’t really bother me too much for “it” anymore. I think it may have been the Dr. saying it wouldn’t be advised, or maybe the 2 times I blacked out or the 1 time I stopped breathing?? If that ain’t an ego booster?!? LOL By really it was that bad and he was so scared he just hasn’t bothered me since. Dr. says it is from the rapid heart beat and the jolting and bouncing of my head. What ever it was I really don’t want it to happen again, even if it WAS that good :o) LOL

Silly question…is this a private site? I.e. do I need to worry about what my husband or someone who searches my name will find this?

this definitely puts a strain on marriage. How can it not. But it also can be stengthening. I realize now that my husband will stick with me through anything. I can be very difficult when fear overwhelms me. I think the fear sometimes is worse than the pain. My husband has been to just about every appt. with me…pcp, neurologist, and neurosurgeons. My father-in-law even traveled to Maryland with us when I saw a neurosurgeon at Johns Hopkins because he gets so worried about me. There is definitely a damper on our marriage though because things just aren’t as fun anymore. It’s hard to be joyful when one is worried or in pain. I am always preoccupied with Chiari. While my husband can escape it I never can. Now that my diagnosis has sunk in I am trying to find more joy. I have great kids and a great husband that I want to create wonderful memories with. We have made it a point to really try to enjoy the good days. I want my kids to remember a fun happy mom not just a mom who was always sick. As for the sex(haha) it is really the only time I feel normal or any semblance of my old life. It gives me some time to put Chiari out of my mind. Even still though that has been affected too. I vowed when I got married that I would never turn my husband down(stemming from an upbringing where sex was something a woman endured). I stuck to that vow for over 18 years but now there are times when I am so sick I have to make it clear to my husband that sex is a no go! It definitely makes for an unhappy man…understanding but unhappy!

Illness, like other traumatic happenings in our daily lives, either draws us closer together or sometimes unfortunately drive us further apart. I know I’m lucky that my husband has always been there for me when it really counts, so I guess I don’t many answers on how to make that happen…I wish I did. I think men seem to take a more pratical approach to being ill ahave nd don’t get so much into the emotional side of it and that sometimes is hard for us females to understand. My husband is not too good with the emotional part and I don’t think I’m ever going to be able to change that; I depend more on my daughter and my friends for that. But he is very good with the pratical part of it, especially if there is some action he can take. And that’s what he does for me. He takes care of keeping notes, ordering medicines, keeping track of doctor’s appointments, helping with the housekeeping, helped me with my bath when I needed him to, etc. That has taken so much of the burden off me and let me concentrate on getting well. I don’t know what I would do without him along for my doctor visits to help me remember all the practical stuff that needs to be noted. I’m sometimes busy dealing with the emotional part and don’t even remember the other stuff…and he helps with that part. Hopefully, if you can get them educated about chiari, they will at least come around for the practical stuff. I guess a good alternative is to find a good friend who will help fill that gap. I’m keeing you all in my prayers; if anyone ever needs someone to talk to, you can always feel free to call me; I won’t have all the answers, but I’ll be happy to listen while you talk about it. And…I think it would be great to meet everyone in person one of these days! Blessings. Shirley