[Karly1964]

:shake: I vow to stop trying to explain lupus and symptoms to people who do not want to know or who do not ask me directly. If they ask then I will explain to them:explain: otherwise a simple I am not feeling well should do uch: :temp: :stretcher: Because so far in my experience the only ones who want to know how I am besides on this board are the doctor's and nurses and they listen to what I have to say like you all do. It will save me lots of energy and frustrations and cut way down on the stress.:faint: :afraid: Karly

 

[karen.w.]

Good for you karly!!.:highfive:

Karly I don't feel the need to justify my illness to insincere people anymore..it took me long time to get here but as you said it's definitely less frustrating & less stressful!

don't get me wrong I am more than happy to explain lupus to anyone who is genuinely interested

bye for now..karen x

 

[connie mitten]

I agree...

Hello,
I completely understand how you feel, I have not even been diagnosed yet, and there are people who ask what is wrong, but then when you try and tell them, they don't understand or really don't give a damn. Some people don't want to here how serious it can be, I have found that especially with family. I have always been the strong one in the family, being a nurse they would all look to me for support. I have always been the most supportive one in the family. When a crisis in the family happens it is always me too handle it. So no one wants me to be sick, and they are having a hard time excepting it. They are always trying to make up other excuses why I could be sick. Oh well, it is my turn now, and the support has not really been there. Thank God for this site, that is why I am here, not only to learn alot about what I may have, but also for support, we are both blessed to have this forum.
Take Care,
We all understand...
Connie

 

[Katharine]

Yep Karly well done!!

People are generally not interested. I can't even say if it's a bad thing. They just don't realise how "important" living with this disease can be for us. I sometimes wish it didn't affect our lives quite so much every day. It seems to influence everything we do, each decision we take and I suppose that it will continue to do so unless we get significant relief from it for long enough.
Having said that, it doesn't stop me living life to the full (within my capacities) and having fun.

I remember a woman where I used to work. She has always had little health worries. Now, when I say little, I do mean little - nothing compared to lupus - but I remember we would regret saying "how are you?" in the morning, as she would always take that to be a signal to gve us every last detail of just how bad she was feeling or what she was going through. It's cruel to say that we gave up and just didn't ask any more. I always try to remember how she made us feel when we asked "how are you?" and that stops me wanting to tell anyone else. I tend to just say fine and, as you say, get my support, let out my rants and frustration here (and of course, to an extent, with my wonderful husband).

Katharine

 

[JudifJ]

I am in agreement, too. I lost some "good" friends when I first became ill - one said she wouldn't be able to cope with me if I "took a funny turn" :sad: .

I have never been able to pour my heart out to my mother as everything I have (?) she has had and ten times worse (in her opinion). OK, she has fibromyalgia, OA and heart problems but she is her own worst enemy as my sister and I were trying for years to get her pain sorted and she refused to see a doctor as she "didn't want to trouble him". Trying to speak to my husband is useless as he goes into denial (no diagnosis, therefore nothing's wrong with you) and work colleagues and other acquaintances I haven't bothered to explain as it is not worth it.

If I am having a bad day I might just say, oh, my legs are extra wobbly today or I have a bad headache but I don't talk about the cause of it.

I thank God for this site and all you wonderful people who are so supportive and unselfish in your love. I know I would be much worse off if I didn't have this place to come to.

Much much love to you all

Judi xx

 

[Maia]

Yeah, it works for me (like I wrote about before!). Definitely less stress for me. Sometimes lower expectations for others is the best way to go!

 

[Karly1964]

Yes, the ones who want to know will be there for you when you need them, some friends are there to do things like take out trash, or run to the store and that's their limit, it is much easier to accept their limitations that to keep trying to get them to do what I want or be who I want them to be. Especially right now as I am going through a flare, yesterday was the first time I got off the couch and went to bed, with the phone and portable dvd player....the bedroom is closer to the bathroom. I laid on the bad, listened to the movie, helped a friend fill out some paper work over the phone, very low key. She is one person who will not call when she knows it is my time to be resting, or she waits on me to call. Of course all my friends here always listen and have the most understanding of all. Thanks again, Karly

 

[somerset]

I work part time in a pharmacy which means I often wear my tubigrips on hands and elbows (the other bits don't show ) Often I get asked if I've :been in a fight?: and I just can't be bothered now to explain - no I have systemic lupus - you should see my kidney results - because it gets bewildered looks and I feel like the fool. It isn't right though is it that we should feel this way about people's reactions when we are just trying to get through our days. On top of that I am on steroids again so not only do I look like the Mummy woman with the tubigrips I have a balloon face too !!!