A good friend of mine the other day said to me in a conversation, “ Juliann, you have a cool life… I mean I don’t know how you feel about it but I think you have a cool life.” This friend it came from, trust me, lives a pretty damn cool life so I’m not even going to lie; it completely threw me off guard because I didn’t exactly know how to respond. I thought it over and over for some time. It’s not the perfect response, but I think this might be the best response I have for the world:
I lived a blessed life, and I am thankful for my life but that doesn’t make it any less difficult some days because things are never as “perfect” as it seems.
I constantly tell people I’m a terrible liar. It’s because I am. I really do try to be as authentic as I know how to be with my life, with my story, with the good and the blessings, but also with the challenges. I try to be as transparent as I can—behind the pretty photos, behind the sunset adventures and glorious food spreads, behind on the go shoots and matcha latte flat lays documented on Insta Stories.
But then it’s a night like tonight where I feel the need and a little more inclination to be EXTRA transparent: When my calendar is opened to the month of May marking Lupus Awareness Month, and tomorrow slated as “World Lupus Awareness Day” with a 4am wake up time and half a day blocked out in my schedule for a doctor’s appointment and tests I’m absolutely DREADING even though it’s all the same routine stuff every time.
So here’s some real life, and how I’ve been able manage.
Let me put out a disclaimer though: It has been a journey. Nine years of journeying. If anyone ever goes back to my older blog posts I might have written about Lupus, I can guarantee you’ll probably find that in the beginning it was seriously all a hot mess and I didn’t know what the heck to do with myself.
Nine years gives you a lot of perspective. Surround yourself with the right people and it builds your insides and your soul. It makes your resilient and gives you fight. I don’t let fear stop me from doing activities or pushing my body physically, but I am sometimes definitely more cautious. All that talk about how things stay the same forever? Well, myths are to be dispelled, and some symptoms can go away.
I am stronger. I am healthier. I am so much more stable.
But I also have to work extra hard to keep on top of things and take care of myself at the same time. I have to work twice as hard as some people most days.
I still wake up some mornings feeling like I got ran over by a three big rigs with crushing fatigue—where you can’t speak, see, or think clearly; where you have trouble putting one foot in front of the other because your body is shutting down, like the way your computer battery goes into sleep mode and your processor shuts down. Symptoms very much still flare on occasion and you’re like wtf just happened. But when days like those happen, I have learned to be extra patient with myself and give myself more grace. Also, I just don’t feel bad at all about cancelling plans and staying in bed and not giving two F’s until my body is ready to get started again.
Below is a post I wrote years ago. It’s a little bit of a lengthy read but if anyone is interested, I think it has some valuable thoughts and somewhat informative things about my personal auto-immune health journey, as well as a bit of an encouraging push for people struggling:
YOU CAN’T HOLD UNAWARENESS AGAINST SOMEONE.
I used to get frustrated about it. When I told someone that I was feeling sick, and they would respond with, “oh, I’m sure you’ll become better in no time.” I would get super upset with how people would respond blasting their own two cents that didn’t make any sense at all or have anything to do with I was really going through physically. I would be annoyed at people pushing me to participate in activities, and then proceed to lay down some guilt trip lines about how I wasn’t being a good friend when I told them I couldn’t hang out because my body just wasn’t having it that day. I would tell them that I really needed to listen to what my body was telling me; I needed to rest. They would then answer my decline with party pooper eye rolls and obnoxious scoffs.
BUT THEN SOMEWHERE ALONG THE WAY, I STARTED TUNING OUT THE VOICES. I HAD TO PAUSE AND TAKE SOME STEPS BACK FROM WHAT WAS OCCURRING, GET OUT OF MY OWN HEAD. AND THAT’S WHEN I REALIZED IT WAS SIMPLY UNAWARENESS.
They had no idea what was happening in the world of autoimmune diseases. So how could I possibly hold that sort of ignorance against them? I couldn’t, it wasn’t a fair accusation. It was just humans being humans, and friends trying to be the best friends they knew how to be, attempting to relate and be present or say kind things. In a way, it was a self-inflicted frustration because I never openly talked about what was really going on. More than anything, it was an insecurity that I had no idea how to handle or deal with. I wanted to run. I wanted to hide. I felt like a leper hundreds of thousands of miles away from normality, desperate to mask her spots. I didn’t want to throw myself a pity party. Or worse, I didn’t want anyone else throwing one for me.
As I’m typing out all these words, there’s a part of me that wants to tap the “delete post” button. I guess that would be a hell of a lot easier than sharing parts of my life to the world no one ever knew or would have even guessed. Staying silent would shelter me from the ghostly lies of making assumptions; that someone out there might think I’m a little less capable, a little more weak, or a little less fit to perform or that I might not be able to meet expectations (whatever those expectations are anyway). But then in the same exact moment I find myself submerged in a giant hot epsom salt lavender bubble bath because for the last week my energy level has been at an ultimate low, waking up to shorter breaths and spouts of uncomfortable pain upon inhale; my limbs sensitive to touch, and my body aching from muscle weakness.
Then these lyrics. Out of the blue. Not even a song rendered on my playlist.
“THIS SONG IS NOTHING BUT MOTIVATION IN A TIME OF WHERE REAL IS A DYING BREED. SO SWALLOW THE COURAGE”
I’M SWALLOWING THE COURAGE, LET’S TALK ABOUT IT.
I had a momentary disconnect from reality for a little while. And by that, I mean it lasted for several years. With the amount of research I did, I probably could have written a thesis. And I can’t even begin to count how many times I had looked over my pages of lab work to make sure there were no holes in it before I finally came to terms with being diagnosed with Lupus. The denial was so real, and the sand didn’t begin to settle down to the bottom of the bottle until I received an urgent email from my rheumatologist early one morning that pleaded, “Juliann, please consider starting the treatment.” That was a year and a half after the actual diagnosis. It wasn’t until months later until I finally acknowledged the severity of what this could play out to be. In the last couple of years I’ve chosen to stay off prescription medication and any type of massive treatments, making lifestyle changes in order to compensate. I’ve learned to manage and maintain and live in a way that is pretty damn full, but it still doesn’t disregard that facts are facts or make any of this a fantasy.
LUPUS IS PROBABLY ONE OF THE MOST CONFUSING, MOST TEMPERAMENTAL, MOST MISUNDERSTOOD IN THE GENRE OF AUTOIMMUNE DISEASES.
The best way I can describe it is this: In a normal situation, your body produces antibodies to help fight off foreign invaders (bacteria, infections, viruses, germs, etc.) But with an autoimmune condition (in this case Lupus) your immune system has a hard time identifying what is good or bad to your system. So, your body creates these antibodies that end up attacking and destroying the healthy tissues, organs, and parts in yourself. Lupus is a condition of unknowns and unexpected, which means that you never know when you’re going to feel crummy or what might tick it off. It acts like a roller coaster of ups and downs because you’re constantly flaring and then will be in remission; it’s active, then inactive without warning. There’s no formula or schedule or real pattern. One morning, you might wake up feeling like a million bucks, and the next morning you might want to hurl over into a ball and hug your pillow all day long. It is not at all contagious, and every human who suffers from Lupus has their own personal battle because it affects every individual in varying ways even in the form of symptoms.
LIFE IS LIKE A CASE OF LUPUS, YOU NEVER KNOW WHAT YOU’RE GONNA GET…
IT’S A LOT LIKE THE EBB AND FLOW OF LIFE ITSELF.
It’s you, learning to navigate the realms in which it delivers to you. It’s embracing the mysteries, and sometimes having to roll with the punches. It’s accepting that not all days are going to be productive and that you won’t always be operating at one hundred percent. It’s learning to accept defeat, but also pushing to persevere when opportunities arise or when the timing is right. It’s being creative with what you have in front of you, and figuring out how to make it work.
I SPENT A LOT OF TIME IN THE BEGINNING SEARCHING FOR LIGHT, FRANTICALLY HUNTING FOR A HOPE TO KEEP ME AFLOAT IN THE CONFUSION AND DARKNESS. AND IN THAT PROCESS, I FOUND THAT LIGHT WAS ALREADY BLAZING IN MY VISION BECKONING FOR ME TO GRASP IT.
It has been a journey of not letting any one thing (especially your conditions or your illnesses) define you. After all, you are who God claims you to be. And who He says you are, is that you are His child worthy of all the love His gives simply because you exist. Not because of what you do or your achievements or how “successful” you assert yourself to be.
EVERYTHING ABOUT WORKING THROUGH THIS HAS SHATTERED MY VISIONS OF IDEALS AND PERFECTIONISM—OF WHAT IT REALLY LOOKS LIKE TO TRULY CHASE LIFE.
SOMETIMES, YOU HAVE TO EXPERIENCE LIFE IN ORDER TO UNDERSTAND LIFE.
I really don’t like to call it “being sick” or “my illness” or whatever people say when they come face to face with chronic and autoimmune disease. Instead, I like to refer to it as my healing journey. That’s really what it is. Whether I’m at my worst or at my best, God is ferociously moving in my life in ways I can’t even explain. He is using all those crazy circumstances and experiences to heal my soul. As strange as it sounds, one unforeseen diagnosis seven years ago has grown and taught me more about life and the things in this world that actually matter most, than what I have learned about in over a decade and a half of schooling or reading a thousand pieces of literature.
I’M STILL EXPERIENCING LIFE—STILL ABSORBING AND DEVELOPING, AND BEING SHAKEN UP ON THE DAILY. BUT HERE ARE THE ULTIMATE TOP THREE THINGS I’VE COME TO KNOW SO FAR.
Life is incredibly precious. This is the most cliché thing ever, I know, but there is so much truth in it. Life can change in the matter of minutes, even seconds. So make every moment count. Try to practice walking in perpetual appreciation and gratitude. I promise it’ll make life a little more worth living, being thankful about what it has already, and will continue to offer.
Chase things that are life giving. I’m not saying that you should spend your time skipping on top of rainbows and frolicking in a giant field of purple wildflowers (although, there are definitely times for that). I’m saying that you should spend your time and energy investing in areas where you are able to give life. Because where you give life, is where you receive life. And where you spend your time, is what comes to influence who you are, your values, and your character. Most things in life are usually not what they seem. Step outside of comfort and your little self-built bubbles. Spend some time and intentionally create space in order to expand your visions, your mindset, and your perspectives. You know that saying about spending a day in someone else’s shoes? Do it. See a little further, think a little harder, and breathe a little deeper.
Don’t be that person—you are not better than anyone, and no one is better than you. Plus, no one likes hanging out with douches. So LOVE. Love yourself. Love others. And more than anything, love God. And let that love reflect in your relationships with the people around you. Genuine and authentic love with an extra heaping side of grace is an extremely powerful thing.
To my babies fighting this one head on: You’re not alone. I’m right there with you, and there’s a whole world out there waiting to support you. It’s okay to not be okay sometimes. And believe it or not, at the end of it all, you’re going to be okay.
To the lovelies that are family and friends of ours: Awareness is the greatest gift we can ask from you. Find out more. Ask questions. Spread the word. That, and maybe enjoy a slice of pie or some dark chocolate with us when we need it most.
Personally, I wouldn’t be mad about it.