So, you’ve been diagnosed and now what? WTF!
In my case, it was multiple sclerosis but pick your poison—autoimmune diseases are like the twisted “choose your own adventure” no one asked for. My first thought? “Am I going to end up in a wheelchair?” Yup, that’s where my mind went immediately. Fear doesn’t tiptoe in when you’re given life-altering news. It bulldozes its way into your brain, leaves you standing there, wide-eyed, while everything around you moves in slow motion. That was me, sitting in an ER at 4 a.m. The sound of machines, nurses moving about, the buzz of fluorescent lights—everything muted. My entire life, as I knew it, screeched to a halt. Ordinary turned to chaos in an instant. Reality punched me in the gut, and I was left numb, sitting in a fog of disbelief.
But let me tell you, you’re not alone in this. No one—your family, your friends, even your doctors—can truly understand what that moment feels like unless they’ve been through it. Welcome to the “IYKYK” club—If You Know, You Know. And trust me, we know. That gut-wrenching moment when you get the news, you become part of an elite group that no one talks about, because why would they? Who wants to brag about their immune system deciding to self-destruct? No one signs up for this shit.
You probably have a million questions swirling in your mind, each scarier than the last. *Will I be able to work? Will I be able to raise a family? Will my partner still see me as *me* or as “the sick one?”* Every question feels like a punch to the gut, and the truth is, no one has the answers for you. Doctors will throw around medical jargon, well-meaning friends will try to “stay positive,” and you’ll feel like you’re drowning in the uncertainty of what happens next. I’m here to tell you that it’s okay to feel terrified, pissed off, and completely lost. It’s normal. You’re allowed to grieve the version of yourself that you thought you’d always be.
The hardest part? Figuring out what the hell comes next. What do you do when your world turns upside down? Your diagnosis isn’t just something you check off on your medical chart; it’s something that invades every corner of your life. It sneaks into your thoughts, your relationships, your future. Suddenly, everything feels uncertain. And the fear? It’s relentless. I remember asking myself, “How do I even live like this?” I didn’t want to be that person—the one everyone whispers about when I leave the room. The one people feel sorry for. I didn’t want this diagnosis to define me, but it felt like it had already sunk its claws in deep.
But here’s the thing—you’re stronger than this diagnosis. I don’t say that as some empty motivational BS. I say that because the fact that you’re reading this, that you’re still breathing, fighting through the fear and the pain—you’ve already shown more strength than you probably give yourself credit for. This disease can try to knock you down, but it doesn’t get the last word. You do. Your story isn’t over because of this diagnosis; it’s just taking a twisted, unexpected turn.
It’s easy to feel isolated in this journey, like you’re the only one struggling with the weight of this new reality. But you’re not alone. Not even close. We, the elite IYKYK club, are right there with you. We’re fighting the same battles, feeling the same fears, and figuring this out as we go. We understand the good days when you almost feel like yourself again and the bad days when getting out of bed feels impossible. We know the rollercoaster of emotions, the uncertainty, the overwhelm, and yes, even the humor that sneaks in sometimes because, let’s face it, the absurdity of it all is just too much to handle without laughing.
So, what’s next for you? Honestly, I don’t have the perfect answer. There is no “one-size-fits-all” guide to navigating life with an autoimmune disease. But I can tell you this: It’s not the end. It feels like the end at first, but it’s not. It’s a new chapter, and while this chapter may be tougher than anything you’ve ever faced, you are not facing it alone. You have a community, a sisterhood of women who have been and are, in your shoes, and are ready to stand by your side as you figure it out.
This is your space—our space—to feel, to vent, to share, to scream, and to laugh. Because if we’re going to get through this, we might as well do it together.
