Boyfriend has SB.. how to cope?

[kendranj11]

Hello, i am 21 years old and my boyfriend told me a while ago that he has Occulta SB. He suggested i surf the web and find ways to cope with his condition. He likes to joke about his SB all the time and I find myself not being able to do that. He does not like to talk about it very much and i am not sure why. Anyone in a similar situation? Any ideas on how i can cope with this?
Thanks
Kendra

[misty]

Just treat him like normal. How long have you been dating? My guess is that the more comfortable he gets with you, and you with him, it will get easier for you both to talk about things. And let him joke! If that's the way he copes, then just let it be. I personally think some of the things my body does due to my sb are pretty hilarious, and it helps me to have a husband who can laugh right along with me! It cuts the tension when my body seems to be in the business of embarrassing me!

[angel]

Hello, i am 21 years old and my boyfriend told me a while ago that he has Occulta SB. He suggested i surf the web and find ways to cope with his condition. He likes to joke about his SB all the time and I find myself not being able to do that. He does not like to talk about it very much and i am not sure why. Anyone in a similar situation? Any ideas on how i can cope with this?
Thanks
Kendra

Hi Kendra,
Welcome to the group. My son has SB Occulta and he is 13 years old. I have SB myleo (the most severe form, occulta is the least severe). I can't tell you from the point of view of where you are in the relationship. My husband is not disabled and he copes with it just fine. I don't know that he copes really he just don't care. I mean he loves me for me and the SB just isn't really a factor in our relationship now. When I tried to talk to him about it he already knew everything i was going to tell him (he did a lot of online research about it). He said he researched it because he had one question and that was how long i would live. He said he wanted to see how much time we had to be together. Of course he found out that we have a normal life span. As for day to day care I take care of myself, all he ever does is occasionally get the wheelchair out of the car and reach things for me if i am to short to reach them. He sees me as he sees everyone else, no different. There have been comments made to him about how he deals with it and his response is "I just don't see what the big damn deal is!" I will say when we first got married he wanted to do everything for me. He didn't want me to get out of the car by myself, was afraid i would fall, etc....... It absolutly drove me nuts. I finally had to tell him that if this is gonna work you have GOT TO BACK OFF! I had to explain to him that I lived many years, on my own and raising my son by myself so I can do pretty much everything. He figured it out and now only does that sometimes. We are currently arguing because he doesn't want me to take things to the basement for fear i will fall down the stairs *Insert eye roll here*
I think guys in general don't talk about things as much as women do. My son would rather do anything than talk about his. He has learned to deal with it so as far as he is concerned there really isn't anything to discuss.
Hope that helped. Feel free to ask anything you want. We are good at support and questions.

Angel

[angel]

Good point misty, I forgot to adress that. Me and my husband are SHAMELESS in the joking department! I have always been able to joke about it. I am not upset about it, not ashamed of it and honestly some things are just funny.
He has had people get really mad at him for our joking around but in my opnion if anyone should get mad about it, then it should be me and I think he is funny.
It probably is a way to cope for him or maybe he just don't see it as quite a touchy issue.

Angel

[kendranj11]

We have been dating for 10 months now and we are both committed to spending out lives together. The only reason why it bothers me so much that he jokes, is because he does not take care of himself. he smokes, drinks ALOT and does not go to the doctor... ever. He honestly does not care if he lives or dies. He says "it's the cards i have been dealt". He feels sick almost everyday now. It is just hard to watch.

[angel]

We have been dating for 10 months now and we are both committed to spending out lives together. The only reason why it bothers me so much that he jokes, is because he does not take care of himself. he smokes, drinks ALOT and does not go to the doctor... ever. He honestly does not care if he lives or dies. He says "it's the cards i have been dealt". He feels sick almost everyday now. It is just hard to watch.

Those are issues that a lot of couples face without SBO being a factor. As for SBO it probably won't have any affect at all on the length of his life span, however the smoking and drinking could.

Angel

[kendranj11]

Yes, i know other people have issues with drinking and smoking aside from SB. But will they not have an effect on him being mixed with SB? When he DOES go to the doctor, he lies to him.. doesn't tell him everything. I can't seem to make him see what he is doing is making it worse.

[LisaJoy]

The smoking & drinking are definitely unhealthier for him than the sb. But I can see one way the drinking at least might affect him. Does he have neurogenic bladder? If he does and it hasn't been monitored, his kidneys could be affected.

Unfortunately, he's gotta want to take care of himself - you can't do it for him.

[sean]

Welcome kendranj11, red flag! I am senseing denial and pain.
Not sure how, probably a case of when, I think your bf needs (secretly needs/knows but doesn't know how) a turn around of knowing his SBO (knowing is power, he seems to have none)
Humour! hey it's sooo important but there's humour and there's humour, obviously your feeling the opposite reality, behind the mask. Sometimes you need to laugh to resist pain/tears. Sorry but I think your bf needs/going to need support with this.
I'm not qualified, just some personal experience (male lol), I'm not suggesting some major intervention thing, 'you' (thankyou) may be the support he needs.
Patient ,gentle, don't rush or push, don't give up, don't give in!!!!
(Men!!! don't know why you bother sometimes LOL)
I'm really not sure what 'to' do, just what not to do.
Talking about SBO in a matter of fact way occationally no humour could be good.
Definately your bf needs! (at some stage) to know 'his' SBO.
Hopefully your intrest/concern will rub off on him.
I say if your getting serious, in for the long haul, maybe children??? you have a right to know 'all' there is to know about your bf SBO.
He may not allow himself to get serious until he wakes up to it.
There is a thread of 'hidden' disabilities here ???adults forum, probably worth a read.
Ideally it would be great if your bf could get to know/comunicate with others with SBO.
I'm feeling his fear and I "know" it's a painfull waste of time.
Depression is another thought.
Hang in there, all the best, keep us posted

[MissVixen]

I'm 35 years and have had NO problems getting guys.. Limp or no limp.. big ass due to my nerves..bladder and bowel problems. There either going to accept you for you are, if not move along. I've had guys not be able to handle it and those who did, the ones who loved me and had no problems when I lost my tube to use the restroom, and had to run to the car to get my spare or when I needed more pads so I didn't wet myself during the night and would go with me to buy teena or if I did have an accident, they covered me up by walking behind me. I think your the one with the problem...

[Lifeisgood]

Hi Kendra,
I give you kudos for coming to this site and asking questions! Part of me wonders if your boyfriend might be somewhat uncomfortable talking about some of the nitty gritty details about what it might be like to live with SB (especially since there is often more to it than mobility issues. Many of us also have bladder and bowel issues...kind of embarrassing to talk about to people we love). When you first learn that someone you care for or love has a significant medical condition it can be quite overwhelming, especially if you do not know much about it or how people live with it. So keep asking us questions (that is what we are here for) and keep doing your research! I think that by researching SB and talking with people who have it, you are empowering yourself and your relationship with your boyfriend! You go girl!

[jellolegs23]

Hi Kendra,

My name is Kelly, I am a 28 year old female with Spina bifida at the L4-L5 level and hydrocephalus. I think I am understanding what you are concerned about. From what I am understanding you are concerned about your boyfriend having serious medical conditions that he is in your opinion not taking seriously. You may feel scared, confused, frightened, for him because he isn't taking care of himself and he seems to be taking a serious situation such as his health as a joke. I can sympathize with that. I think you are most afraid of him accidentally making his health issues worse by not taking his personal cares in earnest as an important part of a healthy life. And you might be concerned because he doesn't even let his doctors know that he is not taking care of himself. I am thinking he could possibly have a mixture of things going on such as low self-esteem, depression, and maybe even embarrassed to talk with others about bowel and bladder control problems.

As far as the joking goes its healthy to joke about things that are out of his control when he is taking care of himself, it shows that he accepts himself for who and what he is, however, if he is joking about his health that he may be neglecting and just saying its a part of his life that is not ok and could have an impact on his lifespan. Your boyfriend right now might just need a caring person to let him know that you are there for him when he needs you for support. He might also benefit from counseling to work on his self-esteem and possible depression issues. I hope this helps.

[sean]

G'day Kendra, me again, thinking of you both.
My SB L3-5, S1-2. Big scar at SB site, neurogenic bladder and bowel, tethered cord. Never heard of tethered cord before the age of 40ish, when the symptoms started showing up.
There are no outward obvious signs with my SB,(hidden) the expectations of everyone around me was to be the average fully capable person I appeared to be.
It was all paifully and secretly hidden as expected. Myself and those around me knew no different, ignore it/me and it/I will go away. Healthy neglect my mother called it.
Also, I am wondering if somewhere in your bf past he was told or heard that folks with SB die young.
It was a big issue with me. I believed I wouldn't see 30yrs.
I lived it, little committment, no responsibilities, no goals, no future what's the point.
I was reckless in my ignorance (ignorant bliss).
I can now look back and see the neglect/denial/self abuse. First as a sign of the times, ignorance, I/nobody knew anything different but more so the 'mis'information I/we believed and lived.
Please let your bf know his SBO is "NOT" going to do him in prematurely, he has a long life ahead of him. Mortality is a non issue!
I'm thinking if you can mention/tell your bf everything your finding out about SBO.
He probably won't like it, appear to be not listening (jokeing), I guarantee he is hearing it. Equally feeling your concern and not showing it. You may spark some ownership.