No family support for my illness, friend support comes hard...

I first got sick when I was 13/14... I don't really know because I didn't grow up in a home that allowed me to be sick. I just remember that's when the rashes started and not being able to pull stiff fingers out of my pockets. By the time I was 18, my knee was collapsing, I had scarring rashes, and fatigue that laid me out for a month. 19... pneumonia, pleurisy, and extreme fatigue... etc, etc, etc...

I'm 29, now, and have had a hard fight to find people who want to accept/understand my lupus. One thing that triggers me terribly is to have someone say something like, "you are always sick" or "you are always tired"... I just want to kick them in the arse. My sister is one of those people... and new friends always are those people.

I get why my sister can't accept it... our parents are disabled and they were always sick with either physical or psychological illness growing up. It still hurts but I don't press her to accept it and generally don't bother her with the various icky parts of being sick.

New people are hard to handle. Those I consider close friends, I usually try and explain the situation... almost everyone has been so kind and responsive and made me feel validated and encouraged. One, last year, she made some snarky comments and it is still bothering me. I considered her a great friend, confided in her, spent lots of time with her, and found out she was talking about it with my roommate w/nothing short of immature gossip-status. I skipped her wedding and have a hard time seeing her now... a year later.

I guess this is long, I'm just trying to reconnect with the reality of my life and I'm using this board as a way to articulate all the things I've buried over the last few months.

I am 29, I have 2 autoimmune diseases and 4 additional chronic illnesses. I consider myself in GREAT health all things considered though I do have some acute flare up stuff going on in this moment. I feel like I have flu at least 300 days of the year and probably 30 days of the year, I feel like I've been stomped by a dinosaur, eaten by a teryadactyl and then pooped out, stomped, buried 10 billion years, and burned as fossil fuel. Those are rough 30 days...

Thanks for letting me vent.

Single girl I just want to say i'm so sorry you are going through this .... people can e so cruel sometimes. You sound like a strong person to me, and the friend who you haven't seen for a year is best out of your life by the sounds of it.

Take care and try not to let them get you down (easier said than done) vent as much as you like, it makes you feel better to have a good vent .... tc, Jinnyann xoxoxoxoxoxo

I'm glad you wrote this out and hope you do more too whenever you like. I know from experience that chronic illness can suck - especially in how other people treat us.

And can I kick those mean people in the arse too? I don't know why human beings are so rude at times.

(((((((((((( SingleGirl )))))))))))))

Being sick like that is so difficult. Autoimmune diseases are some of the most difficult for folks to understand. Unless your rashes are quite visible, I'll bet that 90% of the time you "look" fine. It's the same with folks who have MS....they can look extremely healthy, yet inside they are dealing with much neurological pain, problems with eyesight and memory etc. People look at them and say...what's the problem...you look great? *sigh* I've seen first hand a friend who has lupus and what she goes through at any given time. My heart goes out to you because you never know when a flare will occur, no matter how prepared you are, it's never enough. I know a flare can be any combination of things.....not to mention the internal damage that is being done and the meds needed to survive...yep...it sure can be difficult.

Ignorance speaks volumes when folks don't even try to have some kind of understanding about these kinds of illnesses. I hope you find the kind of support and understanding here that you deserve. Also, have you visited our sister sight called NeuroTalk? You may find some great support and information there as well. Best of both worlds you might say

Take good care of YOU!


sabby

I am new here with depression and I need to send 5 post to get to respond to others, how do I post. I dont know how?

Singlegirl, I send the best to you and more than glad to read your vent on this issue am in similar situation and struggling as well. I understand that feeling of feeling ill and on a good day trying to compare it to a 'normal' good feeling of wellness, yet to me I remind myself that I know I am feeling unwell, and to you I would say that I hope that you are having a better now and that you feeling ill and or unwell is real and allowed to feel that way if you do feel so.

I myslef second guess my own wellness and the stares and looks also, in all and really hope to reach out and say hang in there and soon I hope your family and those around you will also begin to understand more. Sincerely and sending out a heart of compassion for your illness' take care, kkris

Take care of yourself, SingleGirl.

And for DownInthedumps - if you want to post a new topic - then there is a button on the topic page - use the "new post" button