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?
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 and the CPAP system from WellAware Systems, 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.
45 Comments on How To Explain Lupus To People With Functioning Immune Systems
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TrippingJanuary 9, 2017 at 5:35 pm (6 years ago)
Keep those lovely pictures coming. You’re allowed to be more than one thing.
damselinadressJanuary 24, 2017 at 10:44 am (6 years ago)
You da best <3
Callie HansonFebruary 3, 2017 at 3:50 am (6 years ago)
Sounds so much like my Fibro and chronic fatigue but even worse. I am sorry you have shit days and I can relate. Clink to better days. Some how some way
EllenJanuary 9, 2017 at 11:27 pm (6 years ago)
Keep smiling and think positive,is hard to do when your body says ouch!! And your trying to carry on like normal, lol. Thank you for your article from all of us who stand with you.
damselinadressJanuary 24, 2017 at 10:44 am (6 years ago)
Thanks for the lovely words. All the best to you!
DonnaMarch 4, 2017 at 2:02 am (6 years ago)
You spoke my heart and made me cry. Diagnosed in 1987, lupus has controlled my life since. Thank you for your words.
GabeJanuary 10, 2017 at 10:48 am (6 years ago)
A good friend of mine, Stacey Kozel, also struggles with SLE (and is a great advocate for promoting SLE awareness). It’s a brutal disease that can manifest in so many different ways.
A flair-up several years ago left her paralyzed below the waist. She, like you, chose not to let this disease define her. Several years of rehab, and fights with insurance companies to procure prosthetics, later…she was able to walk again (with assistance from trekking poles)
In fact, she just recently completed a 7 month “walk” along the 2,200 mile Appalachian Trail. All the more impressive when you think about all the extra baggage Lupus forces her to carry.
Seeing her story unfold, and reading about yours here, is somehow both comforting and inspiring at the same time. So thank you for sharing, and I’m looking forward to seeing more in the future!
damselinadressJanuary 24, 2017 at 10:43 am (6 years ago)
Oh I’ve read all about Stacey! She is so bad ass! Cool that you guys are friends. Tell her that there’s a strange girl in Newfoundland, Canada who really looks up to her haha.
Thanks for the kind words!
KatJanuary 12, 2017 at 3:55 pm (6 years ago)
This is a beautiful, well written post. So glad I discovered it, and you, through the Chronic Illness Blogger network. Your Avengers metaphor is perfect. While I don’t have Lupus, I have EDS and Chiari, and I relate to many of your thoughts about invisible illnesses. It’s an everyday battle, mentally and physically. I’m glad we warriors have each other!!
damselinadressJanuary 24, 2017 at 10:42 am (6 years ago)
Thanks for the kind words! I’m glad my post is helping to explain our bodies weird ways to other people. I love the Chronic Illness Bloggers network so much! It’s such a great resource for us to have to connect with each other.
JoanJanuary 12, 2017 at 4:32 pm (6 years ago)
Thank you for explaining this disease. I know two people with it, one that I am close friends with. This helps me understand her better.
damselinadressJanuary 24, 2017 at 10:41 am (6 years ago)
I love to hear that! Thanks 🙂
DeanJanuary 15, 2017 at 2:26 pm (6 years ago)
Thankyou so much for sharing
damselinadressJanuary 24, 2017 at 10:41 am (6 years ago)
You are so welcome.
Cat NnFebruary 1, 2017 at 2:03 am (6 years ago)
First time here, great, insightful and humourous. I relate to you very well and am a fellow lupie.
damselinadressFebruary 12, 2017 at 3:20 pm (6 years ago)
Thank you and welcome to the blog! 🙂
NaviFebruary 2, 2017 at 2:11 am (6 years ago)
Hi Lisa, just came across your blog – I loved it! I have lupus myself, was diagnosed when I was 17. I would love for us to get in touch in regards to questions and support! =)
damselinadressFebruary 12, 2017 at 3:21 pm (6 years ago)
Hey Navi, I have a facebook page which is where I mostly go to connect with other cool people with lupus! You should go to facebook.com/damselinadresscanada and send me a little message so we can get in touch!
KariFebruary 2, 2017 at 11:19 am (6 years ago)
I love the Avengers metaphors, and am hoping my friends will better understand my disease after reading this! Thank you so much!
damselinadressFebruary 12, 2017 at 3:22 pm (6 years ago)
You’re welcome! I hope it works and that your friends can make more sense of your illness!
StormyFebruary 3, 2017 at 11:03 pm (6 years ago)
Ohhemmmgeee!!! You are brilliant and I love the Avengers! I also had my first flare after being really sick, though I think it was more the radiation and chemo than the cancer. And, I jave this weird genetic mutation that keeps me from detoxing well. I’m basically allergic to folic acid. One donut from the local shop and I’m down for three days. And I love donuts! It sucks! But hey… I’ve got the Avengers inside me. Whoaaaa! Thor! Chill out already with the hammer! 🙂
damselinadressFebruary 12, 2017 at 3:23 pm (6 years ago)
Your immune system sounds like it hates you even more than mine hates me. That’s rufffff. Donuts are the best. I feel you there though, my paralyzed tummy doesn’t like when I eat things like donuts. I tried it last weekend and it didn’t go very well.
Thanks for the compliments on the blog post! Much appreciated!
Pauline NicholsonFebruary 4, 2017 at 6:27 am (6 years ago)
Thank you for taking the time to write this down my Daughter has this terrible disease / illnesss and for many, many years we have tried to fully understand all the implications of Lupus, you have written it so well we now understand so much more and for this I thank you so much. We pray for a cure for this terrible disease and send much love and understanding to all who suffer, many thanks once again I will be saving your words so when people ask about Maria I can make them aware how terrible this illnesss is. We Hope and pray for a cure, Pauline Nicholson xx
damselinadressFebruary 12, 2017 at 3:24 pm (6 years ago)
Thanks for the kind words, Pauline! Best of luck to both you and your daughter!
AfizahFebruary 4, 2017 at 7:21 am (6 years ago)
Hey Lisa! Thanks for writing this post, thoroughly enjoyed reading it. I have lupus too and your post is so hilariously true and relatable. We’ll get through shit days, somehow we will. All the best and take care! 🙂
damselinadressFebruary 12, 2017 at 3:25 pm (6 years ago)
Thanks Afizah! Sending you some non-flare up vibes through the computer (it’s not a fool proof method but hopefully it works).
WendyFebruary 6, 2017 at 12:49 am (6 years ago)
Reading this took my breath away. I had a really bad bout of Scarlett Fever (twice in a row, actually) in 10th grade and have felt bad, not right or normal, and sometimes downright awful since then. Nobody has been able to help me figure out what is happening. Sleep apnea? Narcolepsy? Lyme? Migraines? I do know that I have a heart murmur now. I guess my question is, how did you get people to really listen to you?
damselinadressFebruary 12, 2017 at 3:27 pm (6 years ago)
Scarlet fever illness twins!
It’s really hard to get people to listen to you. Write down and document as many symptoms as you can. Look doctors in the eye and say something is seriously wrong, you know your body well enough to know that, and you need to be taken seriously. If there are every any visible symptoms, take pics. And don’t be afraid to fire a doctor if they seriously won’t listen to you at all. It took me awhile but I finally found a GP and a specialist who have my back and really listen to me. I hope the same happens for you!
MitziFebruary 9, 2017 at 4:24 am (6 years ago)
Hi Lisa, my mother had arthritis since girl, then developed Lupus too. She died 10 years after the Lupus diagnosis. I had a brain surgery 3 years ago and from there I developed fibromyalgia and Sjogren’s Syndrome but my rheumatologist told me my immune system still can morph into something else or not. II know fibro and Sjogren’s are not Lupus but I can perfectly relate myself with your thoughts. I loved the Avengers metaphores, they might help my hubby to understand what’s Lupus. I will follow you.
damselinadressFebruary 12, 2017 at 3:09 pm (6 years ago)
Thanks, Mitzi! Very sorry to hear about your mom. I wish you all the best with your health! Aren’t immune systems just the worst? (When they aren’t working)
Ava MeenaFebruary 17, 2017 at 12:26 pm (6 years ago)
This post is so incredibly accurate – and hilarious. Thank you for writing such a great explanation, I’m sending it to my friends and family.
Lacy AnnMarch 7, 2017 at 2:03 am (6 years ago)
I loved reading this just now! I have been dealing with this wolf since my junior year of high school, and didn’t get officially diagnosed until I turned 25, 13 years ago. Since then, I have graduated from college, held a full time job taking care of children in a full year full day program. I was so lucky to have gotten hired at the center because honestly I’m fairly certain I wouldn’t be able to do it now. I was there for ten years. I’ve been out of work since November 2015, and I’m discovering that even though I’m considered “stable” working in the traditional sense isn’t possible. I’ve started proceedings for disability. But at the same time hoping a job comes through. I’m pretty much past my limits with stress right now.
That said, I’ve started a blog of my own and would love to share this there. Thanks for your inspirational words!
damselinadressMarch 7, 2017 at 8:25 pm (6 years ago)
Thanks Lacy! I’m glad you enjoyed my post! You are welcome to share the link to it on your blog if you’d like! I hope things go well on the job front and that something comes through for you! *fingers crossed*
SherryMarch 22, 2017 at 12:49 pm (6 years ago)
Best explanation I’ve seen so far! I have Complex Regional Pain Syndrome or CRPS for short. Since it is a rare disorder I often call it fibromyalgias (dang near everyone has seen the ads on tv) evil cousin. It is also called the suicide disorder due to the high rate of suicides because the pain is just that horrible. I’ve run into the very same social issues you have. I’m probably going to steal some of what you have said. Keep up the books and blogging! Here is hoping for low pain days and a cure!
angelApril 6, 2017 at 12:41 am (6 years ago)
This is a helpful read for people with lupus like me. Positive mind and a strong heart to cope with it.
TheressaMay 4, 2017 at 11:48 am (6 years ago)
Thank u so much for sharing ur story. I to have lupus and fibromyalgia my pain is constant, I can’t be in the sun, my memory is so bad, some days I can’t remember to do basic things. My Dr tells me I can’t take anything for the pain so I just suffer. I love my boyfriend but even he doesn’t understand what im going through. I feel so alone.
KellyJuly 11, 2017 at 6:54 am (6 years ago)
Fantastic! Everything I’ve always wanted to say but couldn’t put into words!
ShelleyJuly 13, 2017 at 1:19 am (6 years ago)
Awesoe! So well said! I’m going to share this in the hopes that my friends and family will have a better understanding of how much this illness and other chronic I illnesses can suck! Thank you!
BonnieJuly 31, 2017 at 3:23 pm (6 years ago)
Superb description of the overly dramatic immune system! People with calm immune responses are so….what is a nice word for it? They see the visual and judge. I have palmoplantar pustular psoriatic arthritis plus 4 other types of psoriasis. Can totally relate, my lupus sista!!
DennisFebruary 4, 2018 at 10:45 pm (5 years ago)
I am a male with lupus people tell me at times that I good for my age but there are times I feel 90 lupus can kick your butt!
MelodyAugust 23, 2018 at 5:22 pm (5 years ago)
This is such a good explanation. I wish i could just carry this article around my neck and give it to people when they ask or look at me like I’m making this up. Thank you!
Pat BerryhillOctober 6, 2018 at 6:17 pm (4 years ago)
This blog post is everything. I’ve got some kind of autoimmune something going on but no one knows what yet. My antibodies are weird and don’t test positive but I have all the clinical presentations for a few things. I love your quotes. I’ve subscribed to your blog. First one ever really. You’re writing style is relatable. Keep posting. Sending love and light for manageable days.