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how to deal with others??

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Posted 9/3/2008 5:14 AM (GMT 0)
Hi Everyone!

I know this has been a topic of discussion many times but I was wondering...how do you deal with other people who dont have lupus, and dont really know what its like?

I am in college and it seems that obviously most people forget that I have a disease so people are asking me to go out at night or kinda make fun of me sleeping all the time. I am not really sure how to react or act because sometimes I am too tired to go out all night and cant really keep up. It seems like most people dont understand that its not because I dont want to hang out with them, its just that sometimes I really am tired and just feel like spending a quiet night at home (which is normal for most people!) When some of my friends "make fun" of me sleeping a lot, my response is, well I have a disease, duh. But it feels like they just kind of brush it off and just think I am using it as an excuse or as a defense.

I just feel like I am not equipped to live a young, college life-style and I dont know how to deal with it. Even when I do feel like going out, I do spend the night out with friends and just being around a large group of people, standing around and staying up late, the next day I feel drained and exhausted even if I dont have a drink or anything.

Does anyone have any tips on how to keep my energy up, or how to tell people that sometimes I am just too tired to go out even if I dont LOOK like I am tired??

I think that is one of the hardest things about this disease, that we dont appear to ill on a superficial level and therefore people just assume that we can perform normal "young-person" behavior.
Posted 9/3/2008 11:26 AM (GMT 0)
yes most people get tired, but fatigue is different. if you overdo it you pay for it. There is a website called http://butyoudontlooksick.com that has an essay called spoon theory on how to explain Lupus to others
Posted 9/3/2008 4:25 PM (GMT 0)
Misscali,

I can't imagine what you go through. My daughter is a college student and I can imagine that your friends are more interested in what's going on in their social lives than in why one of their friends is always tired. I'm going to talk to my daughter (a junior) about this and see if she has any insight. Even some of my best friends who know I've been taking high doses of prednisone and who hear from my husband how sick I've been, and who, as parents and sometimes grandparents, should be mature enough to understand chronic illness, still pressure me to get out more. They seem to think that (like Okie's brother and SIL) if I got out more I'd feel better. I just use my sense of humor and tell them that I'm just not as tough as they are, or that I've been busy with my boyfriends (they know how much my DH and I adore each other) or some such silly thing. I find that if I get defensive or try too hard to explain they just roll their eyes or don't understand. This is my personal journey and I try to keep it to myself. My dearest and closest friends do understand and as you get older, yours will too.

But I hurt for you for having to lose out on much of your young years and your college years. I wish I had some magic words for you, but all I can say is like the rest of us, live one day at a time and make the most of each day. Today is all we have.

I hope some of the young people on this forum will see your post and share their experiences with you.

((((((Hugs and prayers))))))

Pat
Posted 9/3/2008 4:39 PM (GMT 0)
Sometimes I wonder if we need to use some disease name people are more familiar with...like chronic fatigue syndrome (except 80% of people don't believe that's real either). Chronic mono? Leukemia? (No slight meant to the people who are facing these diseases, they are real and debilitating.) I dunno', it's a difficult problem at all ages, I imagine specifically a problem while in college. Sigh.
Posted 9/3/2008 6:39 PM (GMT 0)
My son has severe epilepsy starting when he was 15. he goes into status when he has granmal seizures. this means his brain cannot reset and is potentially fatal. He must be put into a coma and hope that he comes out of it. as a teenager he had to make sure he had plenty of sleep and had a steady sleep schedule. also no drugs alcohol or smoking of course. when most of his friends were out he had to be home. it was very hard on him. it took a few close shaves and we took a picture of him in the coma so he could see how serious it was. when ever he was having trouble making good choices we showed him that picture.

For me, I wrote my symptoms during a "flare" just to show the doctor. but I suppose if I had a choice between going out with friends or getting the rest I need, I could read those symptoms and think hmmm, is it worth it?

also maybe a blog would help your friends understand what you go through. People have a hard time understanding unless they can "see" it (like the coma picture of my son)
Posted 9/4/2008 5:27 PM (GMT 0)
I know how you feel . when i was first diagnosed with lupus i was only 21 going on 22... and it was really hard becuase i was always the type to go out withmy friends really late to the club and jsut stay out all night long and not have any problems.. then when i started getting really tired and exhaused just by doing normal things i thought it was weird along with everyone else i was hanging out with.. and when i wanted to stay home they thought that i was ditching them and didnt want to hang out with them anymore. and that was not the case at all. i was just sooooo tired!! and slept all the time.

 

well when i was diagnosed a couple months after my symptoms they all felt really bad and then they knew why i was acting that way, why i wanted to just sleep and stay home. and they were there for me came to see me in the hospital and were every supportive.

 

But you know there are some people out there who just dont understand and thats fine.. and i dont consider those people as my close friends. or really friends at all. The people that really care for you and really take the time to understand whats going on with you will sympathize with you and not make you feel gulity for having an illness.

 

I dont really care about the people who dont try to understand or just make me feel worse. you dont need those people in your life.

 

im lucky becuase i have a very supportive family and the most supportive bf to stand by me and to help me when im having a flare.

 

Surronf yourself with people who pick you up when you are down and not kick you when you are already feeling bad emtionally and physically.

 

I hope that you can keep your head up and try to keep your sprits up too when you arent feeling well. Ive been where you are and it only gets better when you think that it can only get worse.

 

Take Care and Good Luck with everything!!

Posted 9/4/2008 8:32 PM (GMT 0)
Misscali, I understand what you are going through.  I was diagnosed with Lupus when I was 22 (8 years ago).  It was difficult for my friends & family to understand why I was unable to run at the same pace anymore.  My sister, in particular, became jealous of my disease.  She always claimed I had an 'excuse' for not going to every family functions.  In fact, I was either sick and/or tired.  There came a point in my 20's I realized it was time to think about me & not everyone else.  So I now do what is best for my health to live a 'normal' life with Lupus.  Needless to say, I no longer communicate with my sister & I'm 100% better off.  It was the best decision I made.  I'd suggest to focus on staying close to those who respect & support your condition.  You may not have as many people around you, but the ones that do stick around will be worth having around. :)
Posted 9/6/2008 6:43 PM (GMT 0)
Hey, sorry you have to go through that too.  I work with a bunch of girls and they are always wanting to go for a drink after a long work week, and it's finally gotten to the point that they don't even ask me anymore because I'm either too tired to go and enjoy H20 (can't drink because of meds) with them, or they don't want to hang out with me because I'm not drinking-someone thought I made a big deal out of not being able to drink.  I feel really out of place at social gatherings sometimes because I don't drink and you can usually find me sitting at a table trying to strike up conversation with someone because I'm too tired to get up and move around. 

 

It's sad and depressing that people would act this way, especially when I thought they were my friends, and actually I've considered them some of my best friends.  I don't have a solution-I wish I did.  It can be lonely when you finally feel better and people don't have the time for you anymore.  Just know that you can come here and talk to people who do understand and feel better.  I guess just find the group of friends that are really supportive and understand you and try to stay positive.  People seem to come and go in life and only the true people ever stick around. 

 

Hope someone can help! ((hugs))

Posted 9/6/2008 7:08 PM (GMT 0)
Hi Firebabe, I understand the drinking issue, as I've never drunk, and have spent years going out & about with people who do. I basically just order what I want. Period. If they have a problem, it's theirs, as I don't care if they do or don't drink. I don't think justification, explanation, etc is needed for what I choose to drink (nor what they choose). If they must comment "This is what I prefer" with a nice pretty smile and a change of topic usually does the trick for me. If they must continue, I stick to my change in subject till they get over it!!! Of course, this is a practice that it's taken years to perfect. As for being included when 'the work gang' goes out -- my group has done the same sort of thing with not doing explicit asking. If I sometimes feel up to it and want to go, I generally say "I'm feeling pretty good today, do you mind if I join you?" or something like that. Sometimes it's a little awkward, but if I don't worry so much about what they think it's easier for me to enjoy myself....again, something it's taken a good while to learn. I also keep a mental list of 4-6 people that I used to do a lot with, and try to make the effort to call at least 1 per week and catch up on the phone, even if I don't have the energy to go out. That way each person hears from me every 4-6 weeks, and remembers to invite me more often. Just my thoughts, hope something will help or maybe spark an idea for you that creates something you feel comfortable doing. It's miserable being lonely on top of being ill!
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