Here’s the thing: I don’t look sick. To a stranger, I might be mistaken as the picture of health. No rashes, scars, and not even a limp. Nothing to give the impression that my insides don’t quite match my outside.
But the reality is that the inside of my body is under attack. Or—I suppose I should say—is on the attack. The autoimmune disease that daily plagues me just so happens to be invisible to all. All, that is, except me.
It’s hard for others to understand when I say, “I just don’t feel good.” They don’t understand when I tell them the energy that used to come so easily to me is now only a memory. It doesn’t make sense to them when my brain fog is so bad I struggle to think of simple words.
But this is my life now—where following a conversation, staying focused on any task, managing my home, and even taking care of my children can feel simply overwhelming.
I know how terribly misunderstood I am. And I know what other people are thinking: She’s faking it. It’s not that bad. Why is she being so dramatic? How do I know this? Because I used to think this way. I used to harshly judge others with invisible illnesses, reasoning that since they looked fine, they must have felt fine too.
Until, all of a sudden, I was one of those sick people. “Turns out, I’m not that great at motherhood,” I shamed myself. How very lonely I felt in my failures not to be the wife, mom, friend, and daughter everyone in my life deserved. It took me a long time to realize there was a physical aspect to my struggles and far too long to get help.
While there was some relief to put a name to my symptoms, there has also been a grieving process. I so wish I could be the person I was a few years ago. I wish I could start every day with a clear mind, tons of energy, and the zest for life that used to come so easily. I miss being the event planner, contributing to an interesting conversation, and being a dependable friend. I miss going out for dinner and drinks, and being the life of the party. It’s hard to face that I just don’t have it in me anymore.
So how do I manage in this new reality of mine? While my world is definitely smaller now, it is so much more full. My friendships are real and authentic like never before. I am vulnerable and open with my people about my joys, pains, and everything in between. And, oh, how grateful I am for the internet. The support groups I’ve found online have given me valuable information and endless encouragement during my darkest days. The choruses of “yes” and “me too” have helped me know there are others out there in the same painful place as me.
And absolutely nothing in my life is curated anymore, and I’m okay with being imperfect. Plus, I do less. I’ve become very good at saying no. I am at peace with disappointing people and have accepted that other’s perceptions of me are not mine to control. In many ways, I wish I’d been able to be this person years ago. Maybe it would have kept me from ever getting sick.
It’s easy to get angry or even bitter, especially when I look around and see people blissfully living their lives, with plenty of energy and mental clarity. All the while I am struggling each and every day, working so desperately hard at my health. My health that at one time, came so easily to me. Some days, it really feels impossible not to spiral into self-pity.
But as a person of faith, I believe that nothing in our lives is ever wasted. That even in the worst of circumstances, God can make beauty from ashes. I’ve seen a bit of that beauty in the past few months since being diagnosed. But mostly, I still feel like I’m staring deep into a vase of dark gray ashes. It honestly feels like the life I used to have has been turned to dust, and it’s up to me to make something beautiful out of it.
Writing down these words may just be step one.
by Erin Burkhardt 
by Stacey Philpot 
by Jen Smith 
