Fifty Shades of No Thank You (A thank-you note to my Lupus.)

I always hated the term “falling in love.” Now bear with me, dolls, this movie/book review is deeply saturated with autoimmune goodness, just wait.  I will get there.

Now I love love. I think love is awesome. This is not a jaded, angry, anti-hollywood post. This is just a problem i always had with semantics. “Falling,” never sounded like a good way to approach love. As i saw it, “falling,” is a result of tripping, and “falling in love,” just sounded like stumbling over your own insecurities and into the arms of whoever would be willing to catch you. To love should be something you choose, and “falling,” is not a choice. “Falling,” is for those who are shaky, and out of control. That is NOT how you want to enter a relationship. I was not game for the whole losing solid ground, being slammed downward in a death-spiral by gravity thing… But then i realized something. I know a lot of really brilliant, deep, independent people who are in love. They fell. They are not stupid, or insecure, or weak. But they did the whole “falling,” thing. How is it, that all of these badass individuals, who i respect so much, fell subject to the whole stumbling-tripping, falling process? Weren’t they focusing? Why did they trip?! And then it hit me.  Tripping isn’t the only thing that leads to falling…

You can also jump.

Now i know this seems like a pretty small realization, but for me, it changed my entire perception of “falling,” for someone. The people to whom I’m referring didn’t fall because they stumbled, they fell because they met someone who made them so excited about life, about their own potential, that they felt brave enough to jump for it. Jumping leads to falling, too. But falling because you jumped is the good kind of falling. It’s the kind of falling you choose.

So where am i going with this psychobabble? Very nice leah, you made up a cute analogy. 332 words later, your sparklemouse readers now have a cute little metaphor. Woohoo? Not to worry, dolls, this is where the badassing begins.

In the book “50 Shades of Grey,” we meet Anastasia Steele, a mousy, nervous, “accidentally” sexy young woman who’s supposed to be a relatable portrayal of all us normal ladies out here.  Now after a chapter of us reading about her insecurities, (her thighs are too slim, her eyes are too large, and her hair is too “tousled and messy,”…yup mhmmm that’s totally what i’m insecure about too, ana. Kindly shut your face,) we watch her meet the dazzling, famous, exciting, psychological disaster zone by the name of Christian Gray. As she falls deeply in love, (the tripping kind, not the jumping kind,) with this man, she begins to uncover his latex and leather coated past. You all know the story. I don’t have to get into specifics, but it involves whips, chains, and alot of really, really mentally unstimulating conversation (not to mention grammatical errors to make any bibliophile, or third grader, cringe.)

Grey is what today’s society deems the ultimate romantic find. He took boring, plain, tiny anastasia, and allowed her to play a supporting role in his big glamorous life. (Did we not JUST do this with twilight?) Oh yes, ladies of 2015. According to what we’ve (whether intentionally or not,) crowned as the love stories of our generation, the ideal relationship involves being swept away from your own boring life and absorbed into someone else’s cooler one. Emotional stability? Lame. Mutual respect? No thanks. All we’re told to want by society is to hitch our wagons to a super shiny star. Edward Cullen. Christian Grey. The literary studs of our time.

In real life though, we all know this is the kind of boy we need to avoid, right? RIGHT?! No girl in her right mind would ever tolerate someone so controlling, so tirelessly disrespectful, so incredibly possessive  outside the pages of her books….right? Wrong. I’ve seen this exact culture weighing in on so many of my friend’s perceptions of what they need and it’s TERRIFYING. We are blurring the lines between whats sexy and fun to read about vs. what we actually need to live happy, fulfilling lives.

Now let’s play a little scenario game, shall we?

Let’s tweak Anastasia steele, in one teennnyyy tiny way. Same big eyes, same mousy demeanor, same rockin bod that she keeps saying positive things about, while pretending they’re negative (damn my embarrassingly glowy skin!) Let’s just give her one tiny thing. Five little letters. Let’s give her lupus. If it’s more your cup of tea, we can give Bella Fibromyalgia or R.A…whichever. Imagine her telling Christian Grey, in her husky voice, that she has an autoimmune disease. SCREEECCHHHH. Hear that? that was her whirlwind romance screeching to a reality-induced halt. Do we think his reaction would be the supportive, loving reaction a good badass needs to thrive? Do we think he’d care about smith numbers and SED rates and white blood counts? Do we think he’d remember which kind of organic strawberries she likes for her smoothies, or what time she wakes up for yoga, or what day she takes her methotrexate and can’t move? No. He would not. Because boys like Christian and Edward are really fun TO PLAY PRETEND WITH. But when it comes to real life, they are paper. Flimsy and one- dimensional. That’s why they only thrive IN BOOKS. REAL GIRLS NEED REAL BOYS. Because, brace yourself, ready for the kicker? At the end of the day we’re ALL going to be focusing on things like that, autoimmune problems or not. Not just the sickies. Doctors appointments and scans and groceries and health are what MAKE UP LIFE. These are problems we’re all going to have to deal with, the only difference being those of us pushed out of our fairytale youth a bit early (by disease,)  have to deal with them NOW. But most people aren’t thinking about REAL things like that when hitching their wagon. Oh no. Most people think about what the books tell them they need to love. This is why I AM SO THANKFUL FOR MY LUPUS.

what did she just say? What. Did. That. Crazy. Ass. Blogger. Just. Say. THANKFUL?! Thankful for this craptastic disease that makes you think about your mortality? This disorder that forces you to grow up way before you should have to?
You heard me right dolls. I am thankful every, single day. Here is why.

The first time post diagnoses i was into a guy, i had no idea when i should tell him. Should i tell him? Do people want to date the sick girl? Is he gonna panic when I’m at doctors for problems he’s never even considered? Am i going to be a burden? Am i too much? Pleaaase don’t let this make him run for the hills.  And then it hit me. There’s only one way to find out. You drop the bomb. You just say it. “Oh, by the way, i have an autoimmune disease called Lupus.” What you can see in that minute, in that flash in their eyes, will tell you so, so much about this boy’s life skills. You heard it here first ladies and gents, lupus is a TOP NOTCH filter for the dating pool. Because the people who will want to be with you, bloodtests and all, are the same kind of people who will wake up to take care of your screaming baby in the middle of the night. They’re the same kind of people who remember to take out the garbage, and Tivo the Oscars for you, and call you beautiful even when you have puffy lupus face. They are the gems that 18 year old you overlooked, and 30 year old you will fantasize about. These are the anti- Cullen/Grays. These are not paper boys. These are the REAL ones. And you have a secret weapon to finding them.

Speaking from personal experience, having my disease has stopped me from hitching my wagon to “stars” that i am now SO THANKFUL I AM NOT STUCK WITH. I’m not waiting around for someone to take me into a big leather room of pain (that actually sounds like a nightmare,) or take me away into a life of eternal, immortal, vampire bliss (also, kind of a nightmare.) Nope. Lupus has taught me, with it’s bitchy, honest voice, to wait for other things. For patience, and kindness, and depth. For compassion, and emotional strength, and psychological stability. For respect, and love, and someone who is willing to SACRIFICE for the person he loves. Someone who understands that Methotrexate day REQUIRES that grey’s anatomy be recorded and the freezer be stocked of Gluten Free ice cream. Someone truly badass.

And for that, Lupus, i am forever in your debt.

But not for the hair loss. I am not in your debt for that, you jerk.

Stay badass,



15 thoughts on “Fifty Shades of No Thank You (A thank-you note to my Lupus.)

  1. I feel as though we would have some really interesting conversations. I think the thing is people know Christian greys and Edward Cullens in the world do not exist. Its just sometimes better yo get lost in fantasies than face reality. Except, in this case reality wins, cause at the end of the day, the main thing I got out of the book was; Dumb attractive girls with plenty of insecurities land stupidly rich mentally unstable men. That’s our society for you lol.
    Thanks for stopping by my blog. Keep being badass

    Liked by 1 person

  2. Great post! Having Hashimoto’s Disease, Pernicious Aneamia and other autoimmune conditions, I never thought I’d find someone who would love me and put up with me!! But now I am married to the most understanding, thoughtful and ‘badass’ man- a real man who appreciates me for me and doesn’t expect me to be his follower (which past ‘boys’ have done!) Our health problems suck massively but they do show who is really gonna stick with you for life and love you completely!

    Liked by 1 person

  3. You nailed this one!!! So, so true- lifelong, non-terminal illnesses like Lupus, RA, or Fibromyalgia (fibro for me!) are the best way to weed out anyone in your life who doesn’t care about you. I wasted no time telling my soon-to-be-husband about FMS when we started getting serious, and he took it in stride and now takes care of me when it’s bad. It takes guts to realize that but you did and you realized it in a great way! Thanks for sharing!!

    Liked by 1 person

  4. Ironically, Fifty Shades of Grey started out as a Twilight Fan Fiction, but E.L. James had so many people like it that she changed the character names and printed it as its own book.

    Now, that little truth nugget aside, I agree. My having a chronic illness really showed me who I could count on in my life, both platonically and in a relationship. Sadly, I have lost friends over being sick, but then again I guess they were never my friends to begin with right? I am more secure in my friendships and in my relationship with my boyfriend. He puts up with my mood swings, helps me when I have bad days, and makes my good days even better. Thats what love should truly be. Plus, if 50 shades was set in a trailer park, it would be an episode of Criminal Minds, not romance. That level of clingy is not healthy.


    1. Whattttt? It’s a fanfic?! Haha that makes SO MUCH SENSE. You learn something new every day, i guess.
      I also lost people over being sick, but like you said, i guess that means i never really had them. And i LOVE how you said that, about the trailer park. I literally laughed out loud. on POINT. You’re awesome.


  5. Leah this is amazing. Your writing is incredible. So is your self awareness and level of gratitude in the face of challenge. At the risk of being a total cornball though, (the kind I myself might want to punch in the face) I want to disagree with one thing. Not all fantasy boys are paper. I married one. You see, when I met Micah he was a lot like grey for me- all wining, dining, jet setting, entrepreneuring, mature and yep, sexy. A little too good to be true. And then one day I dropped my own version of lupus on him. It was not an autoimmune, but perhaps more of an autospiritual disorder. One of a personal nature so I won’t get into it here. But ill tell you what happened. First he was angry, then scared shitless, then we had to process it (much less sexy than jet setting and boozing) and then he became an all the more supportive teammate who understood me better. Warts and all. I only say this for two reasons- one to be cool enough to get in on a conversation that you started 🙂 and 2 to say that being a fantasy on paper or a star is not reason enough to run for the hills. But yes, your ‘lupus test’ (like litmus test! :)) will be just the thing to let you know what should…

    Liked by 1 person

    1. Awww thanks eliana!! Thats so sweet. Means so much coming from you.
      I totally hear you on that. I didnt mean that all stars are paper, i just meant sometimes shine is blinding. I would say you were one of the lucky ones, having landed a strong, supportive, mature star, but knowing you i know luck had nothing to do with it. Amazing people score amazing people.


  6. My handsome honey didn’t actually get a vote. I was well when we wed (yay alliteration) and got sick 8 years later. My bad! Thankfully I chose well, coz he’s still awesome. Although he kinda sucks at taking out the trash. Hmmm. Anyway, great post sweets. As always. You’re so great.

    Liked by 1 person

      1. Hm. I told my husband that we were going to adopt you and you were moving in with us but I can see from some of the other comments that other people already love you so crap there goes THAT idea. Oh well. I guess I’ll have to keep getting my friends the normal boring way.

        Liked by 1 person

  7. Um….I can promise you that I am in love with you and take care of you until we are old and grey. Never leave me. Not from the day I babysat you and made you brown rice noodles and not until the day we take turns driving each other to the Geriatric doctors. Remember me when your famous. *cue brain messages* Xoxo

    Liked by 1 person

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