View Full Version : Hi.. =)
I'm new to this whole forums thing, never really posted on one before. I'm 19 yrs old, and I was diagnosed with lupus and fibromyalgia finally after 5 yrs. My main doctor thinks I should talk to someone about it, but it's hard for me to talk to people in person, because I can see the pain in their eyes and they don't completely understand. My friend was browsing and found this website, so I thought I would try it out. :) I'm not good at talking about it, at all.. So I'll probably just be here to see what others have to say.
I do have a question though. I'm curious how some of you told your loved ones (or even people you just meet) about the situation, so they could understand what you're going through. I've had family members say that I don't "act" like I'm sick, just because I don't go around telling everyone and show how I'm feeling. The people who I thought were my friends, seem to be getting angry with me because I can't run around like normal "kids" my age. It's really frustrating and I guess saying "I'm in pain a lot, and tired all the time" just doesn't cut it.
First of all, welcome! I'm a 40 y.o. guy who was diagnosed with SLE in 2004. There is another excellent Lupus website called But you Don't Look Sick dot com. At that site, there is something called "The Spoon Theory", and it's all about helping others understand your illness. I didn't know of the spoon theory back when I was first diagnosed, but I wish I had. I'd recommend you read it when you get a chance, it can help.
The anger you are getting from your friends is unfortunately a common thing. I had a lot of friends simply stop coming around, and calling. Most of them I've never heard from again. Many of us don't look sick, or we do our best to hide it. Others cannot fully understand our situation. Many try, but the only people I feel totally understand are other people with Lupus. That's what brought me to this website. Talking to others with Lupus helps balance out the people who just don't get it.
Check out the spoon theory, and don't be afraid to dive right into the discussions here. This is a very inclusive group, and I think you will find that this place is full of people who have a whole lot in common with you. Anyway, I'm glad you found us. Welcome!
08-23-2008, 11:43 AM
Welcome to the board. This is the second board I ever joined. The first one had some really good people on it. But you were NOT allowed to kid around and cut up with each other.
It made for a very unfriendly and hurtful place. members who were "caught" sharing a laugh were banned with no explenation.
This is a warm, friendly and safe place to ask questions and share information. You can sit back and just read, or jump right in on any of the posts.
As far as telling people, well I'm kind of a straight up front person. The old gang that I used to run around with were really into burning it at both ends...party hard and work your buns off.
I still work my buns off, but the party girl has settled down to gardening when I can and taking care of myself. My old friends find that way to boring so...there ya go.
I'm 48 yrs old and so are they. They just never grew up and good for them if they are happy like that. I needed to start taking care of my self and my husband. Even though he kicks and screams about it heehee.
And don't worry, there are other young people on this board. There's a good mix. This board isn't about age or back ground...we all have a common enemy we're facing. We are here to support each other.
You'll find out who your real friends are. Flighty friends can be fun but they wont care about what you are going through...and they wont be there to lean on or to even try to cheer ya up or keep ya company.
A real friend may not understand, but they will accept. If you only have one friend like that...they are worth a whole gang of the flighty ones.
Enjoy the site...look around...ask what ya want.
08-23-2008, 11:56 AM
Welcome to the site. I am glad that you found this site. There are a lot of us with Lupus and other auto-immune problems. I know how it feels when people do not understand what we are going through, because they are not going through it. I am quite a lot older then you are, but I have had Lupus most of my life. It sucks when you can not run around with your friends. I hope that you find a lot of comfort in this site as we all understand where you are comming from. Like Rob said that when you don't look sick people don't understand and sometimes walk away from you. You know I have come to learn through the years that those that walk were never really your friends to begin with. I hope that you will keep posting. There are a lot of good folks that comes in here with really great information. Welcome to the site.
08-23-2008, 04:37 PM
Hello Megz and welcome to the site...
I'm truly glad you found us. I have teenagers your age. It is an exciting time in life. If I can offer you anything, it would be this - You may have "IT" (lupus) but "IT" does not have you. Learn as much as you can about it, learn how to take care of yourself, and most of all, learn how to say "thank you" when someone says..."But you don't look sick." You'll be surprised at how empowering that response can be. People who do not have "IT" may never understand how you feel. That is ok. That is also why we are here.
Have fun with your friends when you can. Give yourself permission to stay home in your pj's and watch a movie when you need to. Most of all, know you are welcome here, anytime, no matter how you feel. We do understand.
Hope you are well today.
It was hard to tell my friends how I was feeling when I had no medical term to tell them, a lot of people just thought it was in my head. My doctors basically thought it was all in my head for about 5 years until finally summer 07 I got a bunch of spots all over my body, looked like someone beat the crap out of me. That's when one doctor finally decided that she really thought something was wrong with me. I had doctors that thought maybe it was lupus, but they "didn't want to be the one to tell me" because I was only 18 years old, and just a few months before then I was diagnosed with cancer at 17 right, a few months before my birthday. It was really frustrating, because I just wanted to know what was wrong with me.. but no doctor would give me an explanation. It was stressful, and I wasn't very nice to alot of people.. taking my anger out on them, but the real friends knew that it wasn't me, that I was just going through a hard time.
I never really know how to react when someone tells me that I don't look sick, because I'm too nice and don't want to make a rude comment; but in my head I'm thinking things that I want to say. I'll try the "Thank you" response, I'm sure people will have an interesting reaction. Haha.
Thanks for the advice. :)
08-24-2008, 12:31 PM
And try to say it with the most humble attitude and don't ruin the affect by snorting or laughing :lol:
I'm all in favor of having a bit of fun. For all the waiting and frustrations we go through, you've got to find a whay to have a giggle now and then.
08-26-2008, 11:36 PM
Hi. I actually joined the forum awhile back, but haven't really introduced myself. I was diagnosed with SLE in 2000...I was 18 years old. Just starting out in life, you might say. And basically my life just got put on hold while I got sicker and sicker. My diagnosis was actually quick thanks to the quick actions of a Dermatologist. I had been in and out of the hospital for 2 months when the HMO FINALLY approved the request to see this wonderful doctor. He took one look at me and said "Have you ever heard of Lupus?". If it hadn't been for him I might still be bouncing from hospital to hospital with no answers and thinking I was crazy. The physical pain was quite extraordinary. I had Bullous lesions all over my body and even Morphine wasn't doing the trick. Now all these 8 years later...I felt like I was finally getting my life back. I went back to school. I got pregnant. My kidneys were finally in "good" condition after the Nephritis and Cytoxan. Then I lost my first baby, first trimester. People think that just because it was the 1st trimester I shouldn't feel the way I do...but unless you've felt your body changing as the baby is growing inside, you'll never understand that loss. It broke me. Then my Rheum told me I also had Discoid Lupus. As I type this, my face is a red, peeling, itchy, scarred mess. I'm a mess. After all I've been given to face in this life...there's more pain. It just sucks sometimes. I feel so alone. The people around me try to be understanding, but how can they know unless they have the same thing? lol. At least now, I actually "LOOK" sick.
anyway, that's me. a mess. but still trying to fight through this. I'm so glad I found this site.
08-27-2008, 06:46 AM
TO Meg and Lilykat -
Welcome to you both. It must be very challenging to be your age and sick, and not have your friends understand you...
I was in my 30's when I became sick, and had a very difficult time trying to explain to people how I felt. I hadnt had a Dx yet, so people didnt get it. THe most frustrating part (and still is) is when people say:
"You need to try this new detox formula...you will feel so much better"
"Maybe if you didnt sleep so much during the day, you wouldnt feel so lousy", "You need to get more active, get the blood flowing!! Youll feel MUCH better!"
THese comments make me NUTS...I have learned to deal by now, but it did take a while. As Rob said the "Spoon Theory" is a good example. Though it sucks you are so young, there is a benefit, however, as many of us here went YEARS without Dx and without treatment. The earlier the treatment the better off you are as well.
I hope you both stick around, just to see that there are many of us out here - to listen and understand...
Take care adn keep posting
08-27-2008, 02:12 PM
I'm happy you found the board and glad you are sharing your story with us. Sorry you're messed up right now. Hope you start mending soon. My mother had lupus, but I wasn't aware of that. My sister was diagnosed with lupus and I was checked shortly after that, but turned up negative.
Recent tests have shown positive and boarderline and one negative...so I'm in lupus limbo even though I have a raft of sypmptoms.
At least with my sister there is understanding. I wish I had known that my mother had lupus. I knew she wasn't well, but for some reason she chose to hide the diagnosis from me.
I hope you start to come out of your flare soon.
08-27-2008, 04:09 PM
Welcome Megz and Lilikat,
Im glad you found us. We are a warm and caring group of people. Not tootin my own horn. :wink:
You will find lots of support here. You can listen or you can jump right in.
I look forward to getting to know you both.