Supportive hubbies/boyfriends...families?

[Guest guest]

Who is your support system? Who gets you all through this?

My husband and I have been together for 16yrs, married 9yrs. (I am 31, he is 34.) FORTUNATELY, he's been with me long enough to know that the broken person I am today is 100% the person illness has made me. Meaning, he knows that before this I was never a lazy person, I worked multiple jobs -loved to make money, exercised, watched every bite that went into my mouth --etc. I was so healthy, plus I looked like Pamela head to toe. (Now I look like Roseanne. LOL!) He's been able to see everything happen and that it all started Oct. 3, 1997 when I got implanted. He is tolerant to the things I cannot do, and although my house stays pretty spotless, he has never complained if there were times dirty dishes sat in the sink for days or laundry didn't get done. (That happens sometimes... you all know how it is when your energy comes and goes.) If there are days, or weeks, I can't fix dinner -he's happy with a sandwich. When people say "What does your wife do for a living?" he isn't embarrassed to say I'm disabled and that I've been sick. I can never give him kids, so he just acts like he doesn't want any (despite that we wanted them before I got sick)...........These are just small examples of how he is supportive...and they mean the most.

But, having said that, he is VERY passive in life. It's just his way. He isn't the type of person to stand up and shout when he needs to. So, years ago when his boss tried to keep me off their group insurance ---he let me go uninsured for 2 years. I got little medical treatment or medications. (I didn't have Medicare at the time, either.) This was before I was as sick ---but I will NEVER forget it. I went through PTC onset having NO insurance. That's why it took me so long to get a spinal tap to treat it ---I finally needed one so bad and had lost so much vision, a doctor did it regardless of insurance. Most men would stand up and say "WAIT JUST A MINUTE..." That's just one example of many situations like that. He doesn't stand up for me about things like that. He'd rather I hurt or suffer than someone else hurt, or also if it keeps him from having to get in a confrontation with someone. In life, when something comes down to me being put out or someone else ---he always picks me. There again, he thinks I'm tough and that makes it OK.

He also seems to be so used to my being sick that he forgets that it's a big deal. For example, if his mom or sister have the sniffles he checks on them ten times a day, "Do you need anything? Are you OK? Oh, you must really feel horrible...you poor thing" ---but with me, he thinks I'm Wonder Woman and that I don't need verbal support or that I don't need him to show interest in what I'm going through. His MOM was diagnosed with Fibromyalgia which turned out to actually just be upper body pain in her ARMS only ------GOD FORBID. I love that he cares about his mom and sister, but he doesn't save any of that for me.

I have not one person in my life to stop every once in a while and say "Hey, are you OK? How are you dealing with everything? I know it gets hard." It's so rare that I sit and whine or weep that people just assume I'm OK and strong and that I don't need that. The rest assume I'm just nuts anyway, so they don't acknowledge a health problem to ask about.

I think he's seen me go through so much that he thinks I'm used to it and it doesn't bother me or something ---I don't know.

Also, something that sort of weighs heavy on me... Our yearly income is about the lowest national average. We barely get by... so there's no affording explant until a miracle comes along; however ---his family has money. I've always felt that if I had CANCER or something known and money came between life or health/death that he'd ask to borrow money. It makes me feel like the value of my life, or the quality of it, is less than $8,000 (or how ever much)---- since no one in our families seems to want to help. I know they don't OWE it to me, and I'd NEVER ask ---I probably wouldn't even take it (because I hate owing people)... but it would just be nice if someone OFFERED. If someone made me feel like "Hey... you're worth this to us... there's no price on your life..." But there again, people look at it like "Oh, she needs money for a BOOB JOB..." They don't see it like a life saving surgery, or understand what explant would mean to our health. And the kicker is ---I bend over backwards for our family. Anytime something is asked of me (which can be often), I'm there no matter what ----even if I have to pretend I feel fine when really I'm dying inside. I force myself to do things for other people I can't do for myself...then I collapse for about 12 hours when I get home, but still!!! LOL!!!!!!!! (I'm sure most of you relate!!!)

This board has been the first place in many years that I've been able to talk about what I'm going through and have people understand it and know how hard it is...and not treat me like I'm WHINING or like I'm a hypochondriac.

I have two friends, out of many, who don't treat me like a hypochondriac... and I withhold discussing much of this with them for fear they will quickly think I am one.

My family support ----forget it. They are clueless to this. I have one of those families who are all too busy dealing with their own problems, so they certainly don't want to hear about anyone else's.

Any gals relating to any of this? On the flip side, I feel bad for the ones of you who don't have the support of a loving husband.

Prayers to all,

---Brigite

In a message dated 7/11/2006 9:23:49 PM Eastern Standard Time, deniseplatte@... writes:

All of you are so lucky to have supportive husbands. Loving and caring. Anyone have a difficult one, especially with the health issues?

lv,

D