I have really been struggling with my family not understanding my disease. I was diagnosed when I was 18 and I will soon be 29. It's frustrating and stressful and hurts my feelings when they say I am lazy or I am using my disease as an unhappiness or an excuse. Please anyone who can help me try to help them better understand me, any advice would help!
Hi,I just read your comment,dont worry about what your family says,theyre not feeling what your going thru.
I feel you, I was like that also but there was one long period of over 3months where I was so extremely sick they just had to believe me I don't even walk to the bathroom on my own. That's with a Lupus flare but I also have Fibromyalgia and they still don't believe that one. My husband will grab my arm and when I complain he laughs and says he barely touched me. So it does not matter what other say but if you feel pain I do recommend staying active and keep bothering your doctor until you feel better
I am sorry your having such a hard time getting family support which is so important. I also have a family that does not get the disease at all or want to learn about it. One of the things you can do is send some information about the illness. Short and sweet because if they don’t believe in it they are not going take the time to read a long article. Have you taken them to a dr appt with you? That may help.
The most important thing is to remember that any stress will make you feel worse. Battling with family to explain how you feel is stressful. I have gotten to a point where I take care of me and do things to make my life easier. Read a book on setting boundaries and stick to them.
If you stop and think about it whether they understand or don’t understand does not make your pain any less.
It took me a long time to decide it didn’t matter whether they believe me or how they felt I had to take care of myself. It’s very hard to do. You have taken the first step by coming here where people do understand.
Sending virtual hugs and understanding your way.
Have them read the spoon theory, it may not completely describe the feeling, but it may help.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
The spoon theory is a great way to help people realize how our bodies differ from theirs eventhough we look “healthy”. good luck!
It is very frustrating and hurtful when loved ones don't seem to understand or even question whether or not you're telling the truth. My "disease process" has worsened in the last year and a half and I have developed depression. At first, my husband just didn't understand, especially when I couldn't really explain why I was crying all the time. When I talked to someone outside my family (a psychologist), even I better understood what we were going through. I understood that there were times my family didn't understand and accepted the fact that some people I know may never understand. However, I also dealt with my own feelings of guilt about my limitations and how they affect our family activities. I think us lupies have to take it one day at a time and I love this website, because I know there are other people like me, who understand. My family understands that I need to be in contact with people who do understand, because it helps me to cope and helps me to get through the hard times (of course with their support as well). I also agree with the comments about spoon theory. Hang in there and take care of yourself! :-)
Lupie84,
There are several threads on this site that address this same issue with some really good suggestions. I would certainly not only think about the recent posts, but search for tags for this issue. It appears to happen constantly to so many of us and I think it would be VERY helpful.
I wish I could be there to give you a big hug. There is a ton of info out there, but so dry to read that many family members won't even bother. However, if you can get them to read some of the other threads (even a few posts) perhaps it may make them understand just how ill you are.
This site was a real eye opener to my husband and I am thankful for the wonderful family and friends I have found here.
Chin up, honey. WE KNOW!!
Hugs,
DeAnne
This is a massive issue for me atm, I’m in the process of being diagnosed with SLE, and although im happy im getting answers as to why ive always had a tough time medically, it’s hit me quite hard that this is for life. I have a amazing family but I feel the same sometimes, they don’t and can’t understand because they can’t feel and think what I do.
I feel like People just assume I’m being over dramatic when I say I’m exhausted or In pain everywhere. My boyfriend often grabs me or tickles me - just playing and having fun - but he doesn’t understand when I tell him to stop because its hurting me, and he takes it personally or just thinks I’m being mardy. The ‘Spoon Theory’ is brilliant I think! I try and hide how I’m feeling so I don’t upset everyone else, which is why I’ve joined this group, I’ve only been on here a few hours but already I’m starting to feel more human knowing other people are having the same issues as me!