If you own a computer that has access to the internet you probably heard this week that Selena Gomez was diagnosed with lupus. If you follow several lupus related facebook pages because you also have lupus, chances are you saw 78 thousand links to the exact same 3 sentences about Selena Gomez having lupus and, while you sympathize with her for being sick, this has become your reaction to the headline:

Don’t get me wrong, I love seeing lupus in the spotlight because it is a nasty disease that needs more recognition and awareness so people will start caring more and donating money to find a cure. Hopefully J. Biebz is still pining over Selena Gomez and upon hearing of her diagnosis he donated 10 zillion dollars to the Lupus Foundation of America in a grief stricken move to win her love back. Fingers crossed.

So while I love seeing lupus trending on Twitter because America’s Sweetheart has it, I think the conversation that Selena Gomez has started has some hiccups (which is probably a symptom of lupus). Most media outlets who are reporting on the disease diagnosis are saying that lupus is mostly an autoimmune reaction that causes fatigue, joint pains, and skin rashes. And Selena Gomez is saying that having lupus means just having to take care of yourself. Essentially lupus is being down played a lot.

Selena Gomez is visibly uncomfortable talking about her lupus diagnosis and seems to prefer to discuss her new album. And that’s fine. She wants to be known for her talents. She is also a twenty-something year old girl and Cyndi Lauper assured us that girls just want to have fun. So she probably doesn’t want to be known as the sick girl.

Besides having a blog where I talk very candidly about having lupus, I don’t go around in my day to day life wearing a sandwich board that says “HEY LOOK HERE I HAVE LUPUS AND IT IS A TERRIBLE DISEASE.” It’s not the first thing you want people to know about you. You want them to formulate an idea of you based on your charming personality, stellar wardrobe, hilarious wit and disciplined work habits first. I couldn’t imagine constantly being in the spotlight and having strangers stick microphones in my face asking me to tell them about every lupus symptom I’ve ever had. I would probably tell them the most embarrassing ones to make them feel really uncomfortable. So I guess Selena is doing a great job compared to what I would be doing.

So I in no way blame Selena Gomez for not discussing her lupus diagnosis in detail with the media. But I can’t help but also see it as a missed opportunity to shed some light on a very confusing, often misunderstood disease. So let me now answer a few of the questions floating around the internet this week about lupus:

1. What is lupus, really?

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? And what parts of my body does it attack, you may ask? Any part it wants. Systemic essentially means whole body. That includes the skin, the joints, the muscles, and all organs. (That was a trick and you passed – I know the skin is an organ). If you can name a body part, lupus can then hear you name that body part and take that as a cue to go destroy its functions. So stop naming body parts!

2. Why don’t Selena Gomez or Lisa Walters look sick? They both look radiant 24/7. How is that possible? 

Lupus is an invisible illness. That means that on the inside our immune systems could be screaming WE ARE SPARTA! while brutally attacking our healthy cells like they are Persian soldiers in the Battle of Thermopylae (how smart do I sound now?!), but on the outside we look no different. I mean, if you looked close enough you would probably see bags under our eyes because we are constantly tired, or you may see us wince in pain, or limp sometimes when random joints and muscles sporadically start hurting. But if you have a team of makeup artists like we do, you might never notice a thing.

Another reason may be because lupus is a disease that has flares and remissions. That means when our symptoms are flaring we will be really sick and odds are we will be stuck in bed or in the hospital. And when we are in remission, meaning that our symptoms are not super active at that time, that’s probably when you’ll see us out and about and snap pics of us for that page in People magazine where celebs are spotted doing normal things like shopping and taking out the trash. You probably don’t think we look sick because you never actually see us at our sickest.

3. So what exactly are the symptoms of lupus? 

Why do you have to ask such tough questions?! The list of symptoms are long, but that doesn’t mean that everyone with lupus will experience the same symptoms. Because it is an autoimmune disease, and everyone’s immune system is different because our kindergarten teachers taught us that we are all unique individuals like snowflakes, every single person will experience lupus differently. That can make it really tough to diagnose it, by the way. But here is a list of possible symptoms (and I bet there are a million other symptoms too, because let’s not forget that it can affect your entire body).
-Fatigue (this is not the same as being tired and if anyone ever tells me that it is I will fight you)
-Joint and muscle pain
-Fever
-Photo-sensitivity
-Butterfly rashes on your face & lots of other skin problems
-Inflammation of any part of your body including kidney, lungs, heart, brain, spinal cord, liver etc.
-Pain in chest when you breathe in
-Abnormal blood clotting
-Edema (swelling of the legs, hands, or around your eyes).
– a trillion other terrible things

4. Why did Selena Gomez say she was undergoing chemo? Isn’t chemo a cancer thing?

Wrong! Chemo isn’t just used for cancer, although I understand why you thought it was and I forgive you. It can actually be used for multiple purposes, including the treatment of autoimmune diseases because it can help suppress an over-active immune system. One of the most popular treatments for lupus is the oral drug methotrexate, which is a chemo pill. You can also be administered intravenous chemo treatments for more severe lupus symptoms like kidney inflammation or other organ problems. Selena Gomez is not the only person with lupus who has had chemo for the disease. I personally haven’t had chemo for my lupus but I know people who have.

5. Can Selena actually have a stroke? 

Yup. Essentially you can be as creative as possible and think of any health complication and lupus could cause it. You can have strokes, seizures, heart attacks, etc. etc. Inflammation in the body is a pretty shitty problem and that’s what lupus does to you. But again, that doesn’t mean it will happen to everyone who has lupus. Some people are more likely to have more serious complications based on gender, race, lifestyle choices like smoking or poor diet etc.

6. Are Selena and the Biebs going to get back together?

Guys, that has nothing to do with lupus.

7. How can I learn more about lupus and donate to find Selena a cure? 

Well first of all, thanks for specifying that you just want to cure Selena and leaving me out of that. I’m a little hurt by that, won’t lie. Secondively, you should check out the website for The Lupus Foundation of America. It is an amazing resource and will have lots of great ideas for fundraising or donating, and a wonderful place to have all of your lupus questions answered. Also, their ambassador is Mr. Fitz from Pretty Little Liars. So you can look at pictures of him on that site too.

And if you are Canadian and would like to donate to Lupus Canada you can check them out by clicking here.

If you have any other lupus questions for me just leave them in the comments or e-mail me at lisa@damselinadress.ca. I would love to help you understand what the disease is actually like so the internet will stop being filled with comments like this:

“Lupus doesn’t exist. It’s a made up illness.” -fatcatbureaucrat

You’re right, Mr. Fat Cat. We have been duped by the medical community for far too long!

 

 

1 Comment on Let’s Talk about Selena Gomez’s Autoimmune Disease

  1. Helena
    November 20, 2015 at 4:28 pm (3 years ago)

    Well said. Selena Gomez has downplayed lupus. It does concern me that people might have gotten the wrong idea and think lupus isn’t really serious. Like any disease, there is a spectrum of severity so perhaps she is just lucky and overall feeling pretty good. You just did a great job educating people on the reality of what it is really like to have lupus. Anyhow, I miss your posts. Only one per month. Are you OK? Hope you are just busy working or something …
    And no, I’m pretty sure Selena and Biebs are over for good.

    Reply

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