I have SLE and am a mental health therapist. One of my areas of interest is assisting women and their partners in dealing with chronic illness. I'm currently exploring what partners do that is and is not helpful to women in dealing with their disease.
Please let me know what your partner does/has done that has been helpful in your adjustment to living with a chronic disease. On the other side, what are some things your partner does/did that increases your trouble adjusting to and dealing with the changes and losses caused by SLE.
And, for those that are not in a relationship or were not at time of diagnosis............Any feedback about the pros and cons of not being in a relationship as it relates to living with chronic disease would be helpful.
Some things my husband (of 5 years) has done throughout the dx & "living with it" parts of SLE that have been helpful are: encourage me to express my feelings, encourage communication with all family members about disease and Dr. appts, expresses concern when I am feeling "invincible" and apt to overdo, encourages me to do things for myself that help me feel good about myself, & talks about his feelings.
Some not so helpful things have been: avoidance when I'm not feeling well (sometimes), talking about his feelings (I know-it falls into both categories because it's good and bad).
The issues that have been most difficult for us to deal with is how our life together might be changed by this disease. For example, we will probably not be able to have kids biologically due to my kidney problems, which we have beth been mourning a bit.
Hope this is helpful!
My boyfriend of a long time has had real trouble with fully understanding this disease. He either aims too low or too high. When I tell him that I feel bad he sometimes tells me to think positive, and to "think awayĒ the pain. I know he's trying to be helpful, but it really isnít. It only makes me NOT want to tell him that I feel bad.
And yet other times, he starts telling me about things he's read, reminds me that we may never be able to have a family, and that if we do, I may not be "functional" later in life, and he's worried about how to take care of me then. (All these things he tries to tell me in efforts to plan for the future..) It just reminds me of what may be to come.
He still hasnít quite found his way to a middle ground of being supportive enough, but not dismissive or overreacting. Itís been very hard.
Also, when it comes to intimate times, he still sometimes thinks that itís him- that Iím not attracted, etc... When in reality, intimacy may be the last thing in my mind...
It's very complicated. He has his shining moments, but itís hard.
Part of it I think is me. I still havenít developed a good way to deal with it myself, let alone teach HIM about how to deal with it.
I guess the best thing to do would be to communicate better, but after almost two years of being diagnosed we still havenít found the right language for it.
Since my husband has had to deal with a wife and a daughter with this disease, he has been very supportive and understanding. My daughter's disease was completely different from mine (her Lupus affected her internal organs and she subsequently succumbed to the disease in 1999) so my husband had to learn how to deal with completely different symptoms, medications and treatments.
He understands, completely, what I mean when I talk to him about fatigue. He has educated himself about the disease and its symptoms and he is very conscious about my limitations, my emotional changes, my relapse triggers, my nutritional needs and my need for rest!
I guess that I would have to say that the most important thing that he does is to make himself aware of the disease and educate himself about it and me! In so doing, he has become very supportive, understanding and patient!!
My husband is pretty great with me. He's very supportive of me. He helps me by grounding me and letting me know when I'm taking on too much and when it hits hard, he's there to pick up all the slack no matter what his schedule is like.
He has a wonderful sense of humour and really raises my spirits. He's also very understanding when I tell him he's being a bit too hyper and perhaps he can burn off some energy and take the dog for a walk, he does just that without an arguement.
He tells me everyday, even vomiting in the hospital that am beautiful and wonderful. he's very good for the ego, that's for sure.
He does SO much around the house and getting my prescriptions and gives me weekly injections of methotrexate. Cleaning the house and just taking care of any chores, making sure I'm resting okay.
Downfall, same thing - doesn't want to talk about how it affects him. He occassionally says it's hard and that he feels hopeless half the time and I reassure him of what he truly does for me.
I told him about my illness on the first date, it was only fare and he was 100% accepting and onboard and wanted to go to my doctor to find out what he could do or not do for me...
I am blessed, however, one thing - the only thing that really bothers me is that he's very attracted to me even when I'm obviously in pain and nausea and the whole bit and I have to tell him to back off because how I'm feeling and I assume he should know that, it should be a given. We have a great sex life but I think because it's great, he assumes that it might be great ALL the time... not so much. Hard to get in the mood when you are doing breathing exercises hoping to not vomit.
That's it though, 90% of the time he's fantastic, the rest he's "annoying me" in some fashion! Not bad I would say! After all, he is a guy and they do tend to annoy from time to time for anyone. haha
I had to chuckle at your post, especially the "annoying" part!! My husband, like yours, has also picked up most of the slack around the house and does not get annoyed at my fatigue.
We have settled into a very comfortable rythm now and after 32 yrs of marriage..he still tells me that I am beautiful and desirable. I often wonder how he could find a woman bent over the toilet vomitting up her guts, or laid out on the couch unable to move, or bawling and boohooing over pain that will not go away..beautiful and desirable??????
My therapist told me not to question it, but to cherish it and to let him know that he is still the tall, slender, muscular hunk that I married 32 yrs ago....I still see him that way!
You are indeed blessed 100% of the time (including the 10% of annoying time) :lol:
I wish you and your husband the very best!!
Take very good care of yourself and know that YOU ARE NOT ALONE!
Peace and Blessings