Percentage of failed marraiges due to CIDP?
AnonymousDecember 17, 2009 at 11:27 pm
The previous marraige post has my concerned because my wife and I have been dealing with these advesities prettye well considering the economic climate, outstanding lack of knowledge of CIDP just about everywhere and the extreme costs of uninsured treatments. I fell like a less than important member of society amd have no idea where or how to make my voice heard. Of the many folks who use the forum have alot of you out there lost your wife or husband because of your disease? For those who still have a strong marraige what advice can you give me to protect my support? I’ve lost so much of my own body but I never want to lose my wife and child.
Do you all think a memior about living with CIDP would be a good idea? And would anyone be interested in being part of the story. I have received so much from this forum and hope to return the favor. I have no writing background so if anyone out there is in the field please let me know.
AnonymousDecember 19, 2009 at 1:29 am
I don’t believe my marriage has suffered due to my CIDP, & I had a very severe case & continued to be that way for a very long time. I came down with CIDP that was originally dx as GBS due to the sudden onset, as well as the severity. I was a 48 year old teacher at the time & my husband was 5 years from retirement, as his company has a pretty good pension after 30 years of service. We had saved well for retirement, as we both like to travel. We were both extremely athletic (downhill skiiers, cross-country skiiers, heavy duty snowmobilers, walkers, tennis, etc.) A lot of those activities have been lost due to my partial recovery, but we still manage to find lots to do together, like cooking, lighter snowmobiling, crusing in our boat, fishing, & traveling.
I believe we weathered what so many said would have done in their marriages, because we had weathered adversity early in our marriage. After our daughter & son were born, I had a sterilization procedure done, but got pregnant anyways. Our third child was born with spina bifida, a pretty severe case. So at ages 27 & 29 we faced a liftetime of caring for a disabled child we had not even planned on having. But we stepped up to the plate & lovingly took on this challenge. We couldn’t be prouder of our son; he has always been an exemplary role model for the disabled & very independent.
I believe a strong marriage can survive almost anything. Even at my worst, we cuddled a lot & told each other how much we loved one another. I am going to bed now, as we have been “out” the past two nights, but will try to add more to this thread later on.
AnonymousDecember 19, 2009 at 4:13 am
The problem is that any chronic or debilitating disorder or injury changes the relationship in ways that you can’t anticipate when you say ‘I do’. Most of the time, when we vow ‘in sickness and in health’, we assume it will be in health; we don’t consider that either person will ever be chronically ill. So when one partner becomes ill, it’s a matter of adapting.
The most important thing in any relationship, but particularly in marriage, is communication. Chronic illness brings a plethora of emotions — sorrow, anger, guilt, overprotectiveness — which come and go and overlap. Both partners sorrow at the loss of ability; both can become angry at that loss; the unwell person feels guilty because they think they’re letting their partner down; the well person feels survivor guilt; the well partner may become overprotective, and the ill person may resent that or may become overly-dependent on it.
My mum has Alzheimer’s and my father during the last couple of years of his life grew increasingly angry — he had always been the strong, ‘nothing I can’t handle’ type. But he couldn’t help my mum; all he could do was care for her the best he could and watch her deteriorate. And my mum, during her more lucid times, was also angry at what was happening to her. When they could talk about it, they didn’t — neither of them knew how, and they didn’t want to ‘burden’ each other. They didn’t realise that by not talking they were burdening themselves, each other, and the family.
One thing that helps is to focus on ’til death do us part’. Marriage is meant to be for life, but too often when things get hard people abandon that, focusing on themselves rather than on the couple. They take the ‘selfish’ way out — infidelity, divorce, etc. — rather than rediscovering what brought them together in the first place and making the marriage work.
PS: lest you think me unqualified to discuss such matters, I have a doctorate — it’s in Judeo-Christian history. However, my GBS/CIDP friends like to introduce me as Doctor Deb, which makes it sound like I should have a late-night radio psychology talk show. So call Doctor Deb with your problems! 😀
December 19, 2009 at 8:40 am
Not true for my wife and I. Our marriage is wonderful (35 years in August of 2010). CIDP is just another adventure on our journey together.
AnonymousDecember 20, 2009 at 12:21 am
I can’t really comment on the marriage portion of your posts because I do not have CIDP, my 21 year old son does. so my situation is different there because my husband and I are not dealing with an illness with us instead we are caring for our son. It is not a stress free relationship by any means because I care for Ryan daily and my husband works. I tend to be overly protective of Ryan (I find I treat him like a child sometimes) I try very hard not too because he is 21 but its hard when you care for him on a daily basis helping him with preparing food and other tasks that us abled body people take for granted. If I treat him to o much like a child ryan does tell me. I find that Ryan and I are very close. we are not only mom and son but friends. I cherish that.
My husband (ryan’s dad) isn’t always understanding about ryan’s condition, Like he forgets that CIDP causes chronic fatigue. Ryan goes to PT twice a week and comes home and takes a nap. My husband gets mad sometimes if ryan sleeps too much because he worries ryan is depressed. Or he will come home and find ryan napping and he will go into his room and want ryan to do more PT. then I get annoyed with him for exspecting ryan to do more when he just spent all afternoon doing PT. so there are times I get snotty with him (dont always mean too) but I forget when your not around it all the time you do forget. so communication is everything. I find if I take the time to nicely remind him that ryan is tired because of the CIDP and he just did pt that day then he understands more. He loves ryan alot and wants him to get better but he forgets about the fatigue that goes along with CIDP. The fatigue is such a huge part of this disease.
I also had a question for you, have you tried to get put on medicaid? Ryan got medicaid before he got SSDI. He didnt have any insurance and I was going to school for medical billing and coding and found out if you have an diagnosed illness and no insurance you are considered medically needy and can get approved for medicaid. so we filled out the paperwork and he got it and they pay for everything. his doctor appts, tests, and percriptions.
as for the book great idea. it helps bring awareness to the illness and it gives people who are diagnosed with teh illness and family and friends another resource to read. Ryan started off keeping a journal and thought that someday he would turn it into a book but he can no longer journal cuz he can’t write and has trouble with typing. he got a software called dragon speak but doesnt have it trained yet.
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