Good luck to you, you're a trooper.
A few years ago, I started having the worst chest pains. I couldn't
explain them. I started looking up that and a few other symptoms I had
on Webmd and Lupus came up. I wasn't too sure what it was and looked
The more research I did, the more and more I realized that this sounded
just like me. It explained my arthritis pains, random bruising, and the
red rash on my face. I've had all these problems my whole life but just
attributed it to bad genes.
I haven't ever really been to a doctor other than things like strep and
to get my shots. When I was about 4 or 5, my mom took me to the doctor
for my constant daily migraines. They were so bad as a child I sometimes
couldn't even get out of bed to go to school. But the doctor couldn't
give me an answer, and I think that's really the moment I gave up on
As I got older, though, my migraines became less and less frequent. I
didn't care to ask why. And when I started reading more and more about
lupus, I read that exposure to sunlight could exacerbate the symptoms.
And it hit me. When I was little, I played outside all day, every day.
And as I got older, I stayed in more and more. And usually the only
times I got a migraine was when I'd go outside all day.
I always thought my random bruising was because I was clumsy, even
though I could never remember hitting things (and when I did, it took a
heavy hit to actually cause a bruise on me). Puzzling, but I didn't
question it too much.
And I always used to get sick. Once a month, sometimes. I never took
medicine, and eventually I just got better. I got sick for sure when I
went to the beach for vacation or something of the like. Again, I just
thought bad genetics were to blame.
I would have never guessed what the culprit was. When I found out, I did
almost too much research on the disease, joined a forum and talked to a
bunch of people who also had lupus. Just to make sure. Because I don't
have health insurance, and there's no way I could afford to see a doctor
(or maybe even many doctors) over and over again just to get a
diagnosis. And everyone had almost the exact same symptoms as me.
When I told my boyfriend at the time, he made fun of me for thinking I
had lupus, and went to his friends joking about it. They'd all laugh at
me and I didn't understand why. I don't ever complain about being sick,
why would I just come out of nowhere with some random disease to get
So I stopped telling people. I never mentioned it to anyone again.
Sometimes when I'm really close to someone, I'll tell them about my
symptoms. But I won't ever tell them the name of the disease. I won't
tell them too much.
This whole thing has made me realize that I'm strong on my own, and
other people don't need to know what I'm sure I have. They don't need to
know what I'm going through. I know what it is and I can take care of
myself, by myself. Maybe if things ever turn serious, I'll begin to open
up. But having a mild case like I do, I don't need people to help me
through it. :/
Now, I won't go out in summer without sunscreen, I own a parasol,
completely changed my diet, I try to avoid extreme temperatures and for
the rest, I just deal with it as it comes. Sometimes it gets hard.
Sometimes I'm in a lot of pain. But I won't cry in front of anybody
anymore. I won't let people see me limping when I get real bad pains.
And I think more than anything, I tell myself that I'm normal, that I
don't have anything wrong with me, that I'm just having a bad month. Try
to make myself believe it.
When it starts to get bad, I'll consider going to see a doctor. Until
then, it's more than bearable. It's emotionally tolling for me more than
anything. My case isn't serious, but that could still change at the drop of a hat.
I think Lupus awareness needs to be raised. If I'd known what it was, I
think I would have realized I had it a lot sooner. I could have tried
seeking help before I turned 18 and lost my parent's health insurance. I
would have learned how to take care of myself better.
And for those of you who have strange symptoms, even if you think it
could be nothing, don't just keep going about your day. Look into it. If
you have the means, see a doctor. You don't know, it could turn out to
be something serious.
Thank you for this thread and letting others know what's really out
there. A lot of the symptoms are easily missed, even by doctors. I can't
even imagine what you must be going through, with your case as bad as
it is. I'll keep you in my prayers.