Love & Lupus
I know that when I found out I had lupus, the scariest part was telling my husband. You see, my mother also has SLE. Her husband, my stepfather, did not handle it well. Long story short, he was getting narcotic pain pills off the streets, overmedicating her, and cheating on her, in addition to complaining to all his friends and everybody we know how difficult his life is and how much he takes care of her. I know my husband is nothing like this, but it still petrified me. I worried that he would want to leave me. I worried that he wouldnt be able to handle it if I had a severe flare. I worried he would cheat with someone lively and well. I worried he would play the "poor me" card, like my stepfather. Thankfully, my husband did none of these things. He is very supportive. However, not having any prior knowledge of lupus, he underestimated the seriousness of the disease. After attending a lupus walk earlier this month, he understood much better after listening to a woman speak about how much lupus affected her life. So he understands now how serious this is. And yet...I still have trouble telling him that I really am tired, that my joints hurt, etc. because I dont want to seem like I just want attention or want sympathy.I told him many times that I am so glad I was married when I got my diagnosis because I truly think if I was single, I would fully believe no one would choose to be with someone with this disease. Lupus complicates relationships sooooo much. How does it affect your relationship? Marriage? sex life?
I met my (ex) husband when I already knew I had lupus. I was new in dealing with it and I dealt with it by denying it I think. When I didn't feel well it came out in a mood rather than stating that I'm tired. Does that make sense?
Anyways, he didn't care I had lupus... Didn't know anything about it. Learned about it through me. He was not supportive (I felt) at all in terms of helping out (we had a baby within a year of meeting each other, were married after 8 months of knowing each other.... It all happened because I thought I was not going to live to see 30 and I knew I wanted a family).
He was very unsupportive health wise... Even after I nearly died giving birth. He was great at the time of severe illness that you could see physically but not when I looked we'll but didn't feel well.
I decided to divorce him after 12 years of marriage which took great stress off of me!!!! We are very great friends now (5years later) and he is one of my best supporters. He has witnessed how much my body needs to sleep and how unwell I get with medication symptoms or flares that he is a rock to me. Years ago, he couldn't stand me not working (as I was taking care of our daughter). Now he thinks I need to get long term disability. What an amazing transition!!! God is so good!!! (Understatement)
So, I do see another guy who is also amazingly supportive. I thought the same as you that I would be an Un-eligible woman... But the right person can see past your health issues I guess!!!
I definitely feel like I would be undesirable being on long term disability and trying to meet someone.... That's what I'm struggling with now (not the meeting someone part).
That was a big ramble.... Did that answer some of your question?
Yes, that makes so much sense! I too, rushed into marriage because of the other health issues I had, I was unsure of my future. So I had a sort of "it has to be now" feeling and married wayyyy too quickly (luckily it works!). I completly identify when you said he didnt understand when you look well but dont feel well! That is the nature of the beast! I can get up, get the kids to school, pick them up, and cook dinner, but still feel like absolute road kill. Its hard for others to understand because we dont "look sick". Thankyou so much Heather! it is such a relief to be able to put your feelings out there and have someone identify with them and validate them! This made my whole day! I dont feel so crazy, lol.
Lupus patients can be divided into two groups, the ones whose spouses understand and support them; and the ones who don't get support.
My ex didn't wait for a diagnosis. I was weak, gaining weight and barely able to care for the kids and the house. He told me to quit my job because it was costing him money for me to work. After the divorce, I had to work,but had a lot less stress. I still had major surgeries alone without support.
Today I am still alone, but my family, my children support me emotionally. I'm still alone, no one to say........ I'm with you.
I am glad and happy for those who have mates who support them, sometimes I even envy you. But the way my life has gone, I'm on the right road for me.
it is never easy to admit we need help .......
it is even harder to tell our partner that we cannot keep up with our end of the bargain (marriage vows), (1/2 the work load).
as a male, and supposed to be the bread winner, (in my eyes) ..... i found it very hard to talk openly with my wife.
she was having health issues herself, and i now had to say, i cannot take care of you any more.
one of the best things i have found for males to help under stand is .....
females think differently to males.
a lot of males do not really understand the spoon theory .....
but most females relate to it easily.
i hope both of these can help the two of you support each other.
unfortunately, i am no longer with my wife .....
she has found that i have changed so much mentally,
and she has problems with who i have become.
sometimes we are better accepting to live separate lives.....
sometimes we need to change to keep our lives together.
we always need to be true ....
to ourselves and our partner.
I don't even know the meaning of the word anymore, nor do I want to.
I just wanted to say I'm not a big fan of the spoon theory either, but talk about rechargeable batteries and I'm all over it. After 20 years with this illness, my rechargeable batteries have just lost their charge. I try to recharge on the weekends (when I was working full time) and they were supposed to last me till Friday but they lost their charge by mid Tuesday. Junk!!!
Smiley face. Hehe.
My husband and I have been together for over a decade and lupus has always been a part of our lives, even if we didn't know it at the time. Having a diagnosis, first of UCTD and then having that diagnosis "upgraded" later to SLE, helped to explain what we'd always witnessed but never understood. He sees the toll lupus takes on me, more now than it ever has, and I know he worries. He's a protective sort of fellow so he's always adamant to check that I've put on my sunscreen, that I'll stay out of the sun, that I do things to keep me healthy. He'll let me sleep in as much as possible, shoo our daughter away from me when I need to conk out in the middle of the day. In general, he's very supportive.
Even so, I feel horrible sometimes because it has affected our relationship. Due to meds and pain, I can't always be there physically for him. We enjoy a pretty active sex life when I'm not hurting but significant weight gain plus flares sort of put a damper on the sex life. We are avid PC gamers and it sucks to not even be able to enjoy video games as much due to pain. It may sound small but it's an activity we've always done together and to take that away because I can't sit in a chair for too long and/or because my hands hurt, it is a big thing indeed.
I am sorry this is happening to you . I suppose I am one of the lucky ones my husband has always supported me good and bad times.but that is not always the case for everyone. and that is sad. sometimes I believe people forget the vows they take or ignore then. for better or worse. richer for poorer and in sickness and in health. nobody believes it will happen to them. some people just are stronger than others and more accepting. which in itself I thinks show there true character . my mother has sle and so do I and so does my eldest daughter my only hope for her , is she will be lucky enough to find a man as understanding as her father.
I'm a firm believer that everything happens for a reason. I met my bf a few months before I got sick. Turns out his stepmom has lupus so he is familiar with it. He is the most caring,loving supportive man. I have shared everything with him about my lupus. I know that they are not all that way, some of my past partners wouldn't or couldn't have been so supportive.
Basically, things will work out the way they should and when they should. Our disease doesn't do well with stress and an unhealthy relationship can be debilitating to our health. We have to limit the stress in our lives.