So, I was diagnosed over a year ago and when I told my husband and our families they were… Sympathetic? I guess. But no one has even tried to do research or ask questions, it’s like I told them I got a new dog. I don’t want sympathy and it didn’t bother me at first, but lately if I’m not up to going out when I’m having a flare they say things like “oh too tired from your part time job” or “hungover from drinking last night?” Which I rarely drink. Or “why are you always sick, it’s like you’re faking it”. These comments are highly offensive and I feel so alone, I feel like maybe I’m complaining too much but I’m not going to push myself beyond my limit, I found out several times what that limit is but NO ONE close to me understands. I’ve lost all of my friends because I’m not able to go out all the time, shitty, right? My husband is supportive but he pushes me too much and always says “you can do it, you don’t even look sick” that’s what hurts the most, you can’t see what’s going on inside of my body, you see my rashes and bruises but that’s of course because I’m clumsy and don’t take care of my skin, right! I’m so depressed lately and just want to run away, but you can’t run from SLE.
Ive been battling this disease for 10 years. You have your good days and your bad ones. Of course most of the time you dont look sick…but we all know that inside your body is in a constant battle with itself. Sometimes just doing laundry can exhaust me for the day. Maybe you could show him pictures/research on the disease so that he can be more prepared. Sometimes a flare up can come out of nowhere and keep you down…other times you feel it coming.
I feel like im rambling a bit but what im trying to say is that sle is a long road to travel and its worse when you have to travel it alone. Know your limits and dont push them or put yourself at risk
I always send emails…even to my husband…copies of things what others say about what they are going through…and that piece on “Spoons.” I’d even email them all what you wrote here. It’s stinky when people don’t understand.
Paula, I'm sorry your family hasn't taken the time to educate themselves as to your Lupus. Give them information from the Lupus Foundation, or any legitimate Lupus site, things from here....anything for them to 'get it'. You always have 'us'. But, that doesn't make it easier to deal with your family and friends. I too have lost many friends, because they didn't want to learn about what I was going through. It hurts, I know. Try to find a Lupus support group in your area if you can. Then have your husband join you. Education for them is the key. Good luck, and feel better.
Ignorance seems to be a lupie's biggest enemy. I hate when people judge how I'm doing by the way I look, I'm resigned to ignoring the sarcasm, and always doing what is in my best interest, for years I did for everyone but myself, pushed too hard , felt guilty if I couldn't do something or go somewhere, I eventually realized it wasn't worth the price. Educating people can help, but it's still hard to get them to understand how terrible living this lupus life can be. Just remember you are never alone this site is a great source of information and support. Take care of yourself first and always.
It sucks what you’re going through; I have the same problem and my family has tried to educate themselves. But I think it’s the fact that I push myself so much they tend to forget about the lupus factor when I’m at worse. My advice is stand up for yourself. Maybe just one day take your fam member aside and explain that even though things look okay on the exterior, the way you feel inside is completely differently. And it’s going to take some time for them to understand everything about lupus as well, so don’t expect them to understand everything all at once. The other thing that I do is try to encourage my family to participate in lupus walks. Doing this definitely helped and it will also help you feel not so alone.
That meetup.com group sounds awesome LOL! I would love something like that by me! I was dx in January and “never looked sick” and always pushed my limits before then. My family all heard about my dx, but like you, that was it. They had their assumptions, lack of knowledge. Finally, through a therapist’s recommendation, I wrote down all the ways lupus effects me. It turned into a four paged single spaced novella! I started at my hair loss and worked my way through each body part down to the neuropathy in my toes. I explained about avoiding the sun and certain foods, etc. I’ve only shared it with two family members so far, but my response was love and support and apologies for treating me like they had. I’d attempted this with a couple friends and had the complete opposite reaction, so I relate to the loss of close people too. But especially with your husband, I think showing him clips from this site would be a tremendous help. Or have him subscribe? That night be too much, but at least have him read discussions that hit closest to home. Regardless, I just hope you have a better day!
Oh, I can totally relate to the friend part. I stay home way more now cuz friends don’t ask me to do things cuz they think or know I won’t be able to go due to fatigue or it being an active activity. I found that I could start a bunco group once a month and I also go to movie night once a month. These are things we can do. I haven’t done it yet, but I was going to attend a couple classes like crafts over at the senior club. I’m permanently disabled from more than lupus so I explained I can’t do all the sports things offered to adults programs. Hope this helps
I have been the clueless family member and now the diagnosed one… Let me apologize to you on their behalf and I’ll tell you why. I too must apologize.
My mom was diagnosed first 20 years ago. I was an insensitive teen caught up in my own world to really comprehend what it meant. I did no research. Probably gave little sympathy. And probably acted as if she were faking because “she didn’t look sick.” And back then the survival rate was very different than it is today. It must have been scary and lonely for her.
I was just diagnosed 5 weeks ago. It’s hard for me to believe… But it makes sense. I know it doesn’t work this way, but boy does it feel like Karma.
I’m very sorry your loved ones are not understanding the seriousness of this condition. If you doubt their love for you, communicate that directly and let them know that is how bad it feels. Set a boundary, set a tone and see what happens. You are not a victim. You are a survivor and you need their support. They need to line up behind you!
I was diagnosed and living with lupus for 22 years. My rheumatologist brought my husband in from the beginning and explained to him about the effects of lupus. I am not sure if the education of the disease made him more supportive or if the communication daily from me. If I am having a bad day, I tell him. If I am having a good day, I tell him. If I am having a good day that then switches so quickly to a bad day, you got it... I tell him. Since I "don't look sick" or any different on good or bad days, I tell him. When my children were younger they learned that I had good and bad days.
Friends, well friends are only good friends if they love you and accept you for who you are. If they decide not to call you or say insensitive things to you then they are not good friends. I have learned (sometimes it is very hard) and am still learning that positive people bring positive results and negativity breeds negativity. Let go of the negative friends and keep the ones you can talk to.
It is not easy and I still hear from close family members that I bring this on myself. My sister in law tells me that I need to be a vegan because it is what I eat. Others tell me that I need to do this or do that and on and on and on, like it is something that I am doing or not doing that gives me Lupus. I try to remember in my heart and mind that they are saying this because they DO care and people want to "fix" the problem. so I have learned (again, this is not easy and sometimes I have to remind myself) to yes them to death, say yes I have researched that and then change the subject to something much more pleasant. Crazy weather we're having, isn't it??? LOL
First off I’d like to say welcome to the community. Your husband sounds a lot like my boyfriend, even though they mean well it doesn’t come off to us like that. It can be frustrating when people don’t understand the disease or how tired you can be. I don’t think people who don’t have lupus will ever fully understand it but all we can do is try to educate them the best way we can. Ill be praying for you and your relationships.