In need...

I'm new here, struggling with a lot of different symptoms, and am looking at being diagnosed with lupus. Everyone here knows that it affects everyone differently and ranges from mild to severe, but the point is that I am trying to reach out to various friends about what I am going through.

I know for most people it can be controlled, and that I have a lot to look forward to is spite of whatever it is I have. But I don't know what my illness has attacked or howw bad it is at this point. And chronic illness is never easy to endure, or to adjust to.

At the moment, my symptoms are causing me a great deal of pain and impair various activities, and nothing gets rid of it!

But none of my so-called "friends" or even my family get it. They tell me stupid stuff like you just don't get enough exercise, or that it's not a real disease. I'm faking what I'm going through or exaggerating.

I've had people make fun of the fact that I have great didifficulty walking in the morning or for long distances, because of fatigue, joint pain, and problems with some of my organs.

I also had one person tell me that lupus isn't a big deal, you just take one pill a day for the rest of your life and that's it. (Not that he knows anything about lupus or has it himself.)

WHAT?! This is outrageous! Lupus is a real illness, it's a serious illness, and anyone who hasn't gone through it doesn't deserve to talk about it.

By the way, I do have autism, so I know that has a large impact on what I am experiencing. I'm more sensitive because of autism, and it affects how I perceive my world. It also affects my body to some extent, which only adds to the stress that lupus is putting on it.

Also, if I say or do anything insensitive, let me know, and I'll fix it. I guarantee I didn't know about it.

I'm sick of getting dirty looks when I can't walk, or when I complain about the itching and pain of my rash because rashes are no problem. (When you can't sleep for nights on end and develop staph infections, which can be life-threatening, because of a rash, yeah, it's a problem.) I'm sick of being told, everyone gets tired, everyone gets sore, stuff like that.

So, I guess what I am asking here is if anyone else has had to put up with this, and how they dealt with it.

Thanks in advance for reading. Life without lupus!

A.

Now, I am being a whiner!! I hope things get better for you.

Ali

Post edited by: redhairali, at: 08/13/2008 13:32

I have a wonderful family! Although, you know... at first, they thought that if I only lost weight, that I would feel better. They've found out differently. I've lost around 35lbs. due to lack of appetite from pain meds and stress. Well, now, they see that even though I've lost some weight- I DON'T feel better. Some days, I even feel worse. And after losing the weight and seeing this, they decided to educate themselves a little more. They are at least trying to understand.

My having friends, that's a total different story. Yes! They do think that we can just take a pill and be good to go. Or, they think we take too many meds and if we'd quit, we'd feel better. They don't understand pain. Neither the physical OR the emotional. I've lost a lot of friends over the years, as I know many others have too. And I too- am actually better off for that. It's sad, but much less stressful.

I had one friend in particular that we were extremely close. She just didn't get it, and I mean- Not at all! And I would "try" to live up to her expectation of me. Which I often felt I'd need a battery so that I could be the Energizer Bunny (lol!). --- Anyway, she totally exhausted me mentally and physically. Now aren't really good friends. We talk on occasion, and I NEVER speak of my illnesses. I make small-talk and that's it. And you know what? I actually feel a little better... less exhausted.

Okay, so you're wanting to know if we've had to put up with this and how we've dealt with it- I guess, it basically boils down to how the friends act. I do have a few people/friends that I talk to quite often and they actually care about me. But most, no. And those people aren't worth the stress. It might take some time. But you will figure out who is and who isn't a good friend. And although breaking a friendship off can often times be mentally exhausting. It's only for the moment.

And remember!!! You always have us here. We totally understand and DO get it!

This IS a very serious illness. Lots of times, people don't understand unless they're going through or have been through it. Or, unless they are just plain interested, care, and want to learn about it. If a person isn't nice about it... they probably aren't worth a 'deep' relationship with.

Eva

I've been on Prednisone too. Anyone else have weird dreams when they're on it? I had to take doxepin and prednison at the same time for a period...some of those dreams...wow...

So far, I have made a list of people that I don't mention my illness too unless absolutely necessary. But most people are not on it. Most people, many of them on cyberspace, get it!

Maybe my next project should be a list of retorts aimed at people that don't get it. Like a tongue-in-cheek FAQ.

Thanks again.

Ali