How can you talk to your family?

I need some help with this one.  I'm really not sure how to talk to my family about my health.  I have 1 sister who is pretty concerned and trys to understand what is going on with me.  She's offered me her kidney in case I need that someday and she has even offered to be a surrogate mother if the need for that arrises.  The rest of my family doesn't really get whats going on.  My parents are pretty passive about most things though.  That's just the way they've always been.  I have other siblings.  I wish they wouldn't ignore the things that are going on with me.  I know that I've always got friends to talk to, great friends!  But, I really would like my family to be the ones more involved.  Any suggestions? I just don't feel the support that I thought I would when I finally got diagnosed.  I have to say though that I'm glad I was diagnosed with something, because I got tired of my mother always suggesting I have something else.  She's pretty much never believed me when I've felt sick.  Also, I really wish my g-ma would quit telling me that depression causes Lupus.  I'm a firm believer, and I'm guessing most of you are too, that depression may be caused by a flare up, not the other way around.  Anyways, don't mean to drag this on, but I was hoping someone could give me some ideas.  Thanks!

Hi Firebabe,

Lynnwood gave you a link for "The Spoon Theory" . . . make sure to find time to read it. . . and maybe print it out. I was going to suggest the same thing.

I actually have 7 siblings. Only two of them EVER ask anything about my health. We are a very close and supportive family, but, for some reason, Lupus seems to be a taboo topic. I think it is because it is so difficult to explain and understand. For the most part, I just tell people that "my immune system attacks my healthy tissue" then I explain that for me it attacks my connective tissue and that I'm very fortunate that it has not attacked organs. This seems to be the easiest explanation.

That's why this forum is so therapeutic . . . we really do understand each other.

Blessings!

firebabe, this is a tough one that a lot of us go through. The Spoon Theory is absolutely the best way to get family to understand what it is like to live with this illness. If they don't get it after reading the Spoon THeory, then they may not ever get it. This subject came up at a good time. My sister-in-law (my hubby's sister) called last night and during the conversation she asked what I was doing with my days now that I'm not working and the kids are in school. My hubby, who was also on the phone chimed in and said that I was doing too much and not resting enough (he does get the whole lupus thing). My SIL's response to this was, "Well, it's probably good that you are up and doing things because if you just layed around all the time it probably wouldn't help things anyway". I really like my SIL, but I wanted to explode. I told her that some days I don't have a choice and that my body gets so worn down and my flares get so bad that I can barely get up and make it to the bathroom. I told her that I get so sick of this illness dictating my life that on days I can get up and do things that I end up doing a lot and probably end up doing too much. I still don't think she got it. I was thinking about sending to Spoon Theory to my hubby's family to hopefully help them understand why I sometimes can't do a whole lot wen we all get together. Fortunately my immediate family is pretty good about it. This is such a hard thing to go through and it can make a big difference if you feel like you family supports you and understands. I hope you can find some way to help your family understand lupus better. ((((Hugs))))

I printed out the Spoon Theory this morning and read it over breakfast. I really like it. I also took it to work, and one of my biggest supporters there thought that was the coolest idea. I will share this with others when they try to ignore or talk me out of having Lupus. It's funny isn't it. I know one of you mentioned you feel as though you have to be the strong one. I feel that way a lot. I feel like I have to be brave and when the really clueless people are around, I really try to show no pain, so as to not trouble them. When it all comes down to it, I don't feel like I'm the same person anymore. I don't have the strength and energy to do things that my family has depended on me to do for years. I've always been there for them and it hurts that the favor is not being returned.

Hi, Firebabe. I think we can all relate to your having problems trying to get people to understand what you deal with having lupus. Unfortunately, you will find that when people (even family) don't have their own serious health issues that trouble them on a regular basis, they do not seem to understand those who do. Even if you take the time to try to explain it, it just goes in one ear and out the other. If you do have someone in your life who understands, all I can say is cherish that person! You have to be strong for yourself! Nothing is put on you that you cannot bear. I know it seems like those are just words, but you would be truly amazed at just what you can bare when put to it. That is something you will have to work out for yourself and by trying some things you read on here have helped others manage is a great way to start! By sharing here, you can also draw strength from others. Just try not to get frustrated, we have to just take it one day at a time (if the day is too big, take it minute by minute--whatever works!) Just keep on keeping on! Best wishes!

Hi Firebabe... I totally understand where you are coming from - I'm sure most of us do actually....

Here's one for you - you can have your morning chuckle on this one... 

Both my sister and I have lupus.  My mother doesn't offer any understanding to my struggles but acknowledges and goes on and on about my sister's - now does that make any sense to anyone???   I just can't figure that one out!  My brother told me that one night, he tried to talk to my mom about my health (We were there visiting her about a month ago and I overdid it one day and I couldn't get out of bed the next morning) he said she would  keep changing the subject to my sister!!  It leaves me "scratching my head" so to speak.

I say to heck with all the non-believers... lol

Be strong and stay positive :)

Sands...

 

Oh Frank . . . I do think this is even a bigger issue for men. . . . being understood. How on earth are you working 70 hours a week???? But a great job does help. Always enjoy your posts!!

Blessings!

Hi Peacesoul . . . sorry you are having such trouble . . . Lyme's too??? That's too much!! I hope that gut issue is dealt with quickly . . . I wonder if it's from meds or from the Lupus??

I'm sorry about your bf . . . sounds like a blessing if he cleared the path for a friend or bf who could encourage you better.

Have you explained how the immune system attacks your healthy cells??? That seems to make sense to people. It also explains the varied symptoms and the pain showing up in odd places.

I hope you'll keep us posted about the gut and the Lyme's activity.

Blessings!

Firebabe, this is such a hard issue for all of us, especially since it's hard to have a healthy relationship with people who don't believe us or who don't take the time to understand us. After having been sick for two or three years I don't bring anything up anymore. When I'm asked how I'm feeling I answer honestly and tell them I'm having a great day and feeling better or I'm having a bit of a rough time right now, but things will improve. I'm very conscious of never complaining or of acting as though I'm looking for attention. But I don't make apologies when I'm not up to doing anything. This is my life and I deal with it the best I can. If someone doesn't understand, that's their problem. My mother had lupus and I believe that has helped. She was a sweet and generous woman who never complained about anything and everyone knew that she was sick. I believe that has helped my family understand that I'm not making this up. There are also some pharmacists in the family - my stepson, my son's fiance, and my dad was also a pharmacist, and they know the strong meds I take.

I believe one of the best ways to handle people who are skeptical is to not become defensive or try to go into too much detail. The spoon theory is a great way of explaining lupus but you'll still find skeptics out there. I loved what Lynwood said and agree with her that some people aren't going to change no matter how much explaining we do.

I hope you can find peace with the people in your family. I know I'm especially grateful for my HW family who always believes and supports me.

I was actually talking to my boyfriend about this (I showed him the spoon theory story as well), and he said that he doesn't understand why healthy people have a hard time understanding people who aren't so healthy. He's usually in top shape (black belt, healthy eater) and he said once while training he sprained both thumbs. He said that it was horrible, he couldn't do anything and that made him wonder how someone with arthritis would function. Whenever he's not in top shape, he gets annoyed that his body isn't doing the things that he's used to doing. So, he says, despite being a model of health, he can perfectly understand a sick lupie like me. I thought it was a good example to have someone relate to how you feel. Maybe you guys could use it too.

Take care

Hi, Firebabe. Getting people to understand us is SO difficult. My BF probably understands the most about it (but he too has a lot of health problems). My mom at least seems to try, but I still don't think she really gets it. My dad called me this afternoon and woke me up from a nap that I needed really bad. I did several errands today and that heat just took me out (I probably should have split it up over 2 days instead of trying to do it all at once, Duh!). Anyway, when I answered the phone, he said "Are you in the bed again?". I just said, "Yes, and I really need the rest from all the running I did today." I must have made the point because he didn't drag out the conversation like he usually does; he just said he'd talk to me later. I could tell from his initial response though that he still doesn't get it. I have tried to explain this stuff. I've given out leaflets explaining it until I'm sick of it. All I know is, I understand it! I wish you luck with trying to get your family to understand so they can help you out. I just know you have a job on your hands! Good luck,

Thanks, Rosie. That's a great idea! Duh!!! This disease makes you so crazy worrying with all its' crap all the time, I think it makes your common sense go hide somewhere! You know, I'll have to look at my phone in the bedroom, I've never even actually turned a phone off! Does that make me seem like I have even LESS common sense? I'm going to look at it right now so I won't forget! Thanks so much,