A recent blog post about support from family and friends got me to thinking about my own situation, and I wondered if any of you ever felt or suspected that your support system, spouse, family, friends could be just burned out. We hear about burn out in the workplace, but what about burnout at home?? I think my adult children and husband suffer from this, dealing with us dealing with lupus can at times be an overwhelming emotional roller coaster to say the least, I've had doctors actually tell my family on more than one occasion I wasn't going to live, the last time was 2 years ago, I am still here. I can't even begin to imagine the havoc and turmoil this must create for them. I keep them at a distance more to protect them than anything else, I don't talk much about how I'm feeling or whats going on, it occurred to me a while back, they've had a front row seat through some pretty awful times, they've watched helplessly I've seen the fear and sadness in their eyes, the hurt,frustration and anger that knowing there's nothing you can do to help brings on. I just wondered if it was just me that see's this or do the rest of you see it too.
I see it too. My husband is a paramedic & I often see the hurt, frustration, and worry. He always tells me he wishes there was something he could do to help me. I tell him just being there for me is enough.
Hopeful, I never thought of it that way. You have a very good point. Thank you for bringing this to light. Hope you have a good day.
yes i have seen it in my grown daugters,they cry with me when im having a bad day,which ive had alot of in the last 2 yrs,they always say they feel so bad cause they cant do anything to make me better,my boyfriend left because he couldnt stand it any longer,i know how my kids feel because i lost my mother to cancer and it hurt me every day because i couldnt make her better.autoamune disease is an awful desease,my thoughts and prayer go out to u all.
I see it as well. I was diagnosed 8 years ago, a year after we were married. My husband has been so supportive, he was by my side every time I was hospitalized, day or night. He has held my hand through each infusion and biopsy, but 8 years later he is burned out. He never says anything or complains but I can see it. He developed anxiety, I think he has always been an anxious person but after years of all of this he actually has panic attacks now. I recently had a scare- they found a lump in my breast. It luckily turned out to be calcification, but as I was going through it I decided not to bring it up. He has been through so much and I feel like I just got this under control. I was not about to pull the rug out from underneath him again. At one point he had to sign some paperwork where he had to choose between me and our unborn son as I was hospitalized for my entire pregnancy. I have never asked him about, all I know is that if I had to choose I don't know what I would have done. I figure he has been there for me through good and bad, I want to show him that slowly but surely I am the girl he married. We are very lucky to have our loved ones by our side and Lupus is the type of disease that wears on everyone around us.
Very astute point. That is why I ask that no one visit me in the hospital (except for a quick drop off of clean undies by my husband!) I am lucky to have been cogent and relatively medically savy post-op. Once my family would speak to the surgeon and saw that I was situated in my hospital room, that was it. I decided I'd rather recover alone. I felt that if they didn't see me such a mess, then it could be easier for them. Also, my husband has the house, pets, & work to tend to, & my son has his family. They checked in by text & phone. That was enough for me, & I hoped it gave them a breather from all the drama of the "surprise" hospital visits & subsequent surgeries. I'd rather they use their time after I'm home to visit & help. It has worked well these past three years.
Great topic to ponder, Hopeful!
i see it everyday, the fear and worry, they never complain, and have always been supportive in every way, but iknow how hard it is to not be able to anything about it.
I definitely can tell it crops up sometimes. My husband and son are very supportive, but it still gets to them. Not only that, but I think it is worth noting that those closest to us, those who support us the most, go through the grieving process just like we do when we get our diagnosis. My dearest husband has been right beside me the whole time, but sometimes he has bouts of denial about some things. He doesn't mean to be unsupportive, it's just that whatever IT is, that is beyond the point he's been able to deal with. These loved ones of ours are not super-human. They have limits too. I think it's important for me to make an effort to NOT always talk about Lupus-related stuff, because it can be depressing for poor hubby, even if I'm okay with it. I make sure we have plenty of us time that isn't disease-centric. I try very hard to take his feelings into account, just as he does mine. It's always give and take, a balance that's fueled by love.
never thought about the grieving process for them, we used to spend weekends in our pool or on the motorcycle now I can do neither, we miss those times a lot. Like you I don't talk much about what's going on with me, it would be like beating a dead horse, it is what it is. thanks for the additional thought.
Talencia said:
I definitely can tell it crops up sometimes. My husband and son are very supportive, but it still gets to them. Not only that, but I think it is worth noting that those closest to us, those who support us the most, go through the grieving process just like we do when we get our diagnosis. My dearest husband has been right beside me the whole time, but sometimes he has bouts of denial about some things. He doesn't mean to be unsupportive, it's just that whatever IT is, that is beyond the point he's been able to deal with. These loved ones of ours are not super-human. They have limits too. I think it's important for me to make an effort to NOT always talk about Lupus-related stuff, because it can be depressing for poor hubby, even if I'm okay with it. I make sure we have plenty of us time that isn't disease-centric. I try very hard to take his feelings into account, just as he does mine. It's always give and take, a balance that's fueled by love.
gee I'd love it if someone pruned my shrubs, it would save me paying the landscaper lol
Ann A. said:
I think we also deal with miscommunication about what constitutes support.
Some people just want someone to listen and make soothing noises while they vent about their issues. Everyone is not able to play that quiet listener role. Some people think that when you tell them about your problems you expect them to engage with you in active problem solving.
I think it is worth the effort to be clear about what you want and to make sure that you are asking people to do something of which they are capable.
The same applies to more instrumental support. Both of my kids have careers and families and they cannot be in two places at one time. I try to be reasonable. It still sometimes involves conflict over what is supportive and how it is to be given.
If I want something, I ask for it.
I also think you must speak up when they go too far.
A few weeks ago I had my first serious argument with my neighbor of more than 20 years. She thought she was being supportive. I thought she was being pushy and violating my personal boundaries. She did not understand how strongly I felt until I lost my temper and yelled at her. Then and only then and only then did she realize that she was stressing me out. She was helping me alright. But she was doing stuff that is important to her rather than stuff that is important to me. And I did not like the things she was doing. For example, had someone prune one of my shrubs. She was putting out much effort and it was ticking me off. You can be in charge of pruning my shrubbery when I am dead.
Taking over my decisions is not supportive
I'm sorry I shouldn't have been flip, it would annoy me to no end if a neighbor took it upon themselves to trim up my shrubs, people that think they are being helpful don't realize that they shouldn't assume you want help in the first place. My husband used to be a good one for assuming he knew what I wanted, he's learned to ask me and that assuming is never a good idea when it comes to whats best for me. Like you If I want or need something I will ask for it, or as my Dad used to say" If I want something I'll rattle your cage" and he meant it too. (never quite understood the cage part of it, but I grew up hearing that right up to the day he passed he believed in that)
Ann A. said:
Yes. I am sure that having an amateur who hates shrubs PRUNE a favorite shrub that you had been growing for 20 years and which only needing trimming after it was done flowering would make you ecstatic.
The difference between prune and trim is not in her lexicon.
My husband tends to go into bouts of denial as well, I wonder if it's just a defense mechanism?
Talencia said:
I definitely can tell it crops up sometimes. My husband and son are very supportive, but it still gets to them. Not only that, but I think it is worth noting that those closest to us, those who support us the most, go through the grieving process just like we do when we get our diagnosis. My dearest husband has been right beside me the whole time, but sometimes he has bouts of denial about some things. He doesn't mean to be unsupportive, it's just that whatever IT is, that is beyond the point he's been able to deal with. These loved ones of ours are not super-human. They have limits too. I think it's important for me to make an effort to NOT always talk about Lupus-related stuff, because it can be depressing for poor hubby, even if I'm okay with it. I make sure we have plenty of us time that isn't disease-centric. I try very hard to take his feelings into account, just as he does mine. It's always give and take, a balance that's fueled by love.
My husband also tells me he wishes he could take it all away. My daughter read this post and shook her head. It’s really hard for her to always see me down whether it be depression or in pain. There may be always something everyday. They both have that concept of thinking all that you wrote. Thanks for posting. It helped my daughter know that there
are others that feel the same way regarding family w a disease
I'm glad this helped. one of the great things about this site is you can throw stuff out there get an idea of what others experience and know that you are not alone.