I call it the moment.
I’m sitting perched on an examining table, looking super fly in my cute little paper hospital gown. The doctor looks at me with that look only doctors can do, that impossible mix of being bored to tears and mildly sympathetic. In a monotonous voice, without so much as a glance from her notepad, she says “i’m so sorry dear, you have lupus. *insert disease of choice here.*” she then pats my arm, glances at the clock, and writes me a little prescription. Once that’s done, she proceeds to automatically give me the rundown in that “i’ve said this speech verbatim ten thousand times before and relaying this information to you is all that’s standing between me and my grilled chicken salad right now” voice. She is monotone, she is rehearsed, and she is macklemore fast. Here’s what they tell you, after your (lupus, in my case,) diagnosis “moment,”:
1) You can live a full, normal spanned life, providing you stay on top of your organ function through bloodwork and medication. Play your cards right.
2) Stay away from anything that will trigger your immune system. sunshine, junkfood, excessive physical contact, garlic…happiness basically.
3) You will have flare ups and ebbs. Flares are when you get sick. Ebbs are when you feel normal. Try to not trigger flare ups.
4) The bathroom is down the hall, you can validate your parking at the front desk okaythankyousomuchbyehaveaniceday.
At the time, this will seem like helpful information. You might even think that what the doctors tell you is all you need to know. My poor, sweet little badass. THIS IS USELESS. What they do not tell you is a far longer, far more important list, and i intend to make it known before the next unsuspecting innocent thinks that garlic or sunshine is going to be the worst of his/her problems.
HERE, my beautiful sparklemice, is a list i compiled of what they SHOULD tell you when you’re diagnosed with an autoimmune disease, the things that you really need to know to survive (as for my immunity-blessed readers, there’s some stuff in here that applies to you, too. read along.)
1) You Are Not Your Disease- This is not a changing point for who you are as a person, and the biggest mistake you can make is becoming your lupus. You are the same person you always were, your body just requires a different regiment for upkeep now. It’s just like learning you’ve been caring for your car wrong. Adjust, regain your balance, and keep driving. FLOOR it. Your biggest obstacle at this point is going to be yourself, and the people who look at you with sad, sad Bambi eyes. Which brings us to point two.
2) Pity Is Not Your Friend- But don’t be afraid to ask for help from people you trust. One of the most debilitating things is being surrounded by people who view you as the sicky. If you don’t pity you, they won’t either. But that doesn’t mean you can go it alone. Find the people who you love and respect enough to be vulnerable with, and vent to them. Choose the people you can trust to not see you any differently. (Of course, dolls, i’m also always here for a good vent sesh. Even an anonymous one, if you’d prefer. firstname.lastname@example.org. Hit me up 🙂
3) KEEP YOUR ZEN- THIS. IS. THE. GOLDEN. RULE. Please, loves, if you take nothing else from this post JUST TAKE THIS. This is the difference between thriving and surviving. Flare- ups are stress triggered, and your mind is your safe space. if you get stressed, you will get sick. There’s no way around it. Control the stress, control the flares. Learn what causes your body’s stress signals to go off and avoid it. For most people the best forms of stress management are consistent exercise, a healthy, clean, balanced diet, and solid sleep. I also sprinkle in Game of Thrones and shopping at Anthropology, but season to taste, darling. People who aren’t cool with you going to sleep at 7 pm when you feel like you need to are also generally a good thing to avoid. And gluten. Gluten is ew. But i’ll get all science-y on that later.
4) Your Friends Are Going To Think You’re Flaky- People aren’t going to get it, because this is such a specific kind of problem. but there will be a lot of last-minute cancelling of plans, and that’s OKAY. Just because you were fine at 5:00 pm, doesn’t mean you’ll be fine at 5:01 pm. When your body tells you no, listen to it. Your real friends will be understanding and if people give you a hard time about it, that should tell you alot about their character. Those with lower emotional IQ’s and less of a capability to understand others will struggle, but those aren’t the kind of friends you’re going to need for this anyway. Sianora, guys. You have been kicked off my magical party bus. Enjoy the walk home.
5) This isn’t Instagram- Yeah, so even the prettiest, most Kate Upton-esque supermodels among us aren’t going to be selfie-ready after a flare up. That’s just how it is. Sometimes life does ugly things to your face. Mentally prep for occasional puffy cheeks, tired eyes, swollen joints, weird weight stuff, and maybe even hair loss. It can be emotionally very strenuous, and that’s not gender specific, but learn to laugh it off and you will be soooo much happier for it. Remember, flare ups are stress triggered (See rule three,) so the better you take this, the faster you’ll be back to your fierce Beyonce self.
6) Be Your Own Advocate- Doctors love order. Doctors love regiment. Therefore, they have a tendency to lump people into categories and behave accordingly. The problem with this method is that bodies are very unique and nobody knows yours quite as well as you do. I made the mistake of trying stuff against my instincts and ended up sick as a dog, alone, in a foreign country (spoiler alert: it’s a great story, on my “gap year,” post that should be up later this week,) cause i was too shy to ask questions. Do your OWN research and listen to how your body reacts to things. Don’t let them blindly lead you down that rickety path made of “general rules.” This isn’t to say made your own medical decisions, everything must be monitored and discussed with your physician. But do enough research to be a part of the decision making process. Understand what’s happening and keep up the best you can.
7) Prednisone. Ohhhhh prednisone- I could write about this little demon drug forever, but i’ll sum up. Odds are, at some point, they’re going to put you on this stuff. Actually, if you’re reading this, you’re probably already on it. The drug of the sad, sweaty, weight gain. I am not going to sugar coat it. Temporarily, these guys could ruin you. I’m fairly sure that nobody has ever enjoyed being on prednisone. When it says “side effects may include,” it means “THIS WILL ALMOST DEFINITELY HAPPEN TO YOU,” but that’s okay, because we all did it and survived. You will be starving. SO hungry. Like, eat everything in the house hungry. Imagine PMS but like, for The Hulk. However, your stomach will probably also be doing this weird flip-flop thing, so good luck dealing with the hunger. THE EMOTIONS. Oh dear Lord the chemical imbalance is ridonk. Today, I cried from a Visa commercial. Apparently i’m very passionate about credit scores, and there was this puppy… Ugh it doesn’t matter what i’m trying to say is they mess with you, but it’s not permanent. Don’t freak out. It’s not real, and it will pass. I’m in the withdrawal-weaning off part now, and it’s a KILLER. Like it’s bad. But each milligram down feels like a milligram back to normalcy, and i can attest to the fact that the side effects will go away. Some days you won’t even feel em. On a more practical note, don’t ever take them on an empty stomach. Nobody warned me of that. But you need to know.
8) Brain Fog is Totally A Thing. All Hail The Post-It Note- One of the symptoms typical to autoimmune disorders is cognitive confusion, more commonly known as “brain fog.” This symptom is a tricky little bugger, and it’s hard to identify. You know that groggy, tired, “where’s my cell phone,” feeling? Yup. That would be the fog. Prepare for the fact that you’re probably going to forget things (I left my wallet on a bus, scavenged the entire country of Israel to find it, and then left my phone on the lightrail home,) and set up a system. For me, it’s the post it. For most, it’s the iphone Alert. I’m just old fashioned like that. It’s kind of ironic how the people with so much to remember (appointments, bloodwork, dietary restrictions,) are the ones who have to deal with this symptom, but such is life. Like i said before, laugh it off.
9) You’re not flawed- I mean you are, but like, in the same way we all are. Your flaw is probably your nose, or that you’re mean, or bossy, or cranky when your tired. But your illness? It’s not a flaw. Don’t let it be something you’re embarrassed about, EVER. Your body works in a different way then other people’s do, so you have to treat it differently then other people. It’s not a reflection of your character. Sick does not equal weak. Ill does not equal vulnerable. You. Are. A. Badass. Your immune system doesn’t know what it wants, you but sure as hell do. Don’t let anyone tell you otherwise, or attack you with previously mentioned Bambi eyes. Let this experience evolve you, let make you smarter and more kind. Insecurity turns to bitterness, and bitter doesn’t look good on anyone. In the words of my main man Ralph Waldo Emerson, “Be silly, Be Honest, Be kind.” Share your experiences, laugh about them, and be proud of what you’re doing.
10) Don’t Believe Everything You Read On The Internet- Okay i totally see the irony here. The blogger tells you not to believe the web. Ha ha. But hear me out. Until like, 50 years ago there wasn’t really evolved treatment for this sort of thing. Also, people love drama. The interweb is full of bored/sad humans trying to convince you lovely B.A.I.T’s (Badasses in training,) that this is the end of the line for you. They’ll make big scary statements, and throw “proven” statistics in your face, and post horror stories. They’ll tell you they have cures, and diets, and promise you a lupus free life if you just *insert crazy fad here.* The only statistic you need to know is this one… there is a 100% chance that you are capable of handling this, and about a 2% chance that whatever you’re reading on the internet is accurate. If you’re having a problem, ask a human Doctor. Google is a great supplement, but it will occasionally try to convince you you’re that you’re dying.
So, dolls, there it is. The survival guide. Our own little ten commandments. Please feel free to contact me with any questions, or if you ever want to vent (about something illness related or not, whatev,) or even just throw some autoimmune knowledge my way. I love hearing back from you guys. If there’s any topics you want to request, i’m here for that too.
Ps. Any techies out there who want to help me with blog layout, i would be forever in your debt. While i have alot to say, i’m…er…technologically challenged, to put it lightly. Contact me if you’re willing to be the best sparklemouse ever.