Lupus is a chronic autoimmune disease in which the body's immune system attacks its own tissues and organs. It is not known exactly what causes lupus, but we do know that the immune system is unable to tell the difference between intruders and the body’s own
tissues. Trying to do its job, it attacks parts of the body, causing
inflammation and creating the symptoms of lupus. It is difficult to diagnose, a challenge to treat, and there is no cure.
It is estimated that lupus affects over 1 in 1000 Canadians.
My friend (and '
blogging megastar', as she likes to call herself), Lisa Walters is one of those people, and she writes about her experiences living with lupus in her blog -
Damsel in a Dress. Lisa is hilarious, and she writes in a very funny way about a not so funny topic. Lupus sucks, there is no denying it.
May is Lupus Awareness Month, and so I wanted to help shine some light on this little-known disease. Lisa says, spreading awareness "
allows for those of us with the disease to focus more energy on feeling
better and less energy on having to explain what lupus is to everyone in
the world whose only knowledge of the disease is from an episode of
House."
Here is a post that was originally published by Lisa on her blog earlier this year
:
How To Explain Lupus To People With Functioning Immune Systems
A question I get asked a dizzying amount is “but what is lupus,
Lisa?” Followed sometimes by “and how does it affect you?” It’s not like
I go around wearing a sandwich board that says “ASK ME ABOUT MY LUPUS
TODAY,” but I am often in social situations where someone hears that I
have lupus or I’m being interviewed BECAUSE I have lupus and I write
about it, or I have to take out a giant bag of pills because it’s one of
three pill times during the day and people notice these things. I also
get a lot of emails asking me to explain the disease. Honestly, I
probably get asked these questions as much or more than I get asked
“will that be eat in or take out?” which I can promise you is a lot.
When I was first diagnosed with lupus I didn’t really know how to
explain it to others. I kind of wanted to carry around a set of those
little dinky cars in my pocket so when someone inevitably said “Oh, you
have lupus? What is lupus?” I could just take the dinky cars out of my
pocket and enact some sort of minuscule car crash with a bunch of flips
and a car ending up in a ditch and then maybe depending on how I was
feeling at a particular moment I would then use a bic lighter to light
that car on fire. But that’s not always practical, because some of my
dresses don’t have pockets and some people don’t appreciate me lighting
toys on fire on their coffee tables. So I’ve become better at using my
words to explain what lupus is, what it does to me, and how it makes me
feel. And I guess I should share those words with you, the internet, in
hopes that more people will understand at a quicker rate so I can go
back to not having to explain it in person so often.
WHAT IS LUPUS?
Lupus is a systemic autoimmune disease. What does that mean exactly? It
means that my immune system randomly decides to attack my body because
hey, why not? Some weird switch went off that made my immune system mix
up its signals. Now it thinks that healthy parts of my body are foreign
invaders that are trying to kill me. So my lungs could just be hanging
out doing their normal breathing thing and my immune system will wake up
from a nap and be all like “what the hell is THIS thing? Why is it so
big and how did it get in here?! We must kill it!” And I’m like “no
please, you’re being super irrational right now. Let’s just sit down and
talk this through. This is called a lung and it is meant to be there to
keep me alive.” But my immune system won’t have any of it. It shushes
me like I’m a naïve child and starts punching the crap out of my lungs.
Thinks it’s for my own good. And when it’s finished doing that it turns
around and sees my stomach and goes “Okay holy shit! I swear that wasn’t
here the last time we looked! What is happening?! We need to kill this
too! Kill it with acid or something!” And I tell it to calm down and
just breathe but it’s too worked up at this point. It just wants to beat
the life out of everything. And when I say everything I really do mean
everything. Systemic means whole body. You name it and my immune system
will randomly try to kill it with fire.
My immune system is so busy hulking out on the good parts of my body
that it has no time or energy to stop the bad stuff from getting in,
which gives me a thousand infections. And I use medications like
steroids to knock it down a peg and remind it what it’s supposed to be
destroying and what it isn’t. And that works for a little while and I
have some good days. But my immune system has the memory of a gold fish
so out of nowhere it will turn around, see a healthy organ, and freak
out all over again.
I guess my immune system is kind of like the Avengers. It tries
really hard to protect the world and we all know it means well, but
usually by the end of the fight everything is reduced to rubble and a
lot of innocent people have had cars thrown at them. Okay maybe that
metaphor doesn’t translate perfectly. But you get the point. It’s a shit
show.
WHAT CAUSES LUPUS?
Beats me.
No seriously, scientists haven’t really figured that one out yet.
We’ll be living on the moon soon but our immune systems are still a
complete mystery. They know
something has triggered this weird
autoimmune response in lupus patients but they don’t know exactly what.
Could be genetic. Could be environmental. Could be magic. Could be all
three. I am in no way a professional scientist but I honestly think my
lupus stems from a really bad bout of scarlet fever I had when I was in
grade nine. My immune system has never been the same since then. But
again, I’m not good at science. I just know I’ve felt more or less
shitty ever since then. Yay!
WHAT IS THE HARDEST PART OF HAVING LUPUS, LISA?
For me, I think the hardest part of having lupus is the fact that I
look really healthy on the outside so it’s hard for people to understand
just how sick it can make me.
Lupus is considered an invisible illness. Which means that while the
Avengers are destroying New York City inside of my body I probably look
perfectly fine on the outside. Some might even say beautiful. Those some
would probably be me and my mom. Having a disease with its own built in
invisibility cloak can make it pretty challenging for people to believe
that you are as sick as you actually are. And even though I would be
the first person to tell you to stop giving a crap what other people
think of you, it can be really hard to be called lazy or to worry that
your employer assumes you’re just a slacker if you call in sick. A
disease like lupus forces you to spend a lot of time in your head
wondering how you are perceived by the outside world.
For example, after having to take a break from working due to an
awful flare up, whenever I took a picture of myself smiling or out in
public looking like I was having a good time, I always hesitated before
sharing it on social media. I know that when someone sees these pictures
they will just assume that I’m healthy and faking it, because society
seems to have this perception that if you are sick you have to be sick
every
moment of every day. You can’t have fun and be sick. You can’t smile
and be sick. You can’t have any colour in your cheeks (it’s called
blush, people) and still be sick. And society says that to me so often
that I actually have days when I wake up feeling okay-ish and then
immediately feel guilty for not being at work. Even though I know that
the reason I feel at all like a functioning human being is because I
have been resting. I know that I’m really sick. I know that lupus is
really hard on me and that I’m always tired and in pain. I know that I
spend way too many nights sleeping in the emergency room hooked up to an
iv of morphine to try to keep me from vomiting for just a few hours.
Yet if I have half a day of feeling decent I worry that someone will
find out and point at me and say “faker!” It’s a really weird place to
be. I hesitate before hitting the share buttons on those photos of me
living my life but then I upload them anyway, because I remind myself
that I am sick and will be sick every day for the rest of my life,
regardless of whether or not I’m in bed or out to see a movie with my
boyfriend. But I wish I didn’t have to hesitate at all. I wish I didn’t
have to keep hearing over and over again all the well-meaning people
saying “oh but you don’t look sick.”
So that’s lupus, in a nutshell. I never know how it’s really going to
affect me, and it causes more than just physical problems. When you have
a rather strange, unpredictable illness it affects way more than just
your immune system. It affects your mood, your mental health, your
ability to be social and carry on normal friendships and relationships,
your career, your finances, and how you see yourself as a member of
society. Lupus is a lot of things. It’s really confusing, often scary,
and almost always misunderstood. So thanks for reading this far and
taking a few minutes to better understand how lupus affects those of us
who live with it. And sorry for all of the Avengers metaphors.
*****
Thank you, Lisa, for allowing me to share your voice here in this space today. I hope that this post helps to inform people about what it
is like to live with a chronic autoimmune disease like lupus. We all benefit when we take the time to support each other and learn a little bit about
something that people struggle with on a daily basis.
I encourage you all to check out Lisa's blog -
Damsel in a Dress. She writes raw and honest accounts of her life and her health struggles, revealing details that not everyone would be brave enough to admit. What I love most about Lisa is that she is as kind as she is funny. She tells it like it is, and whether you have a chronic illness or not, she is downright relatable.
