“There’s no cure. No one knows if you’ll ever get better.”
The realities of my situation swirled in my mind as I tried to make sense out of what was happening. None of it was news, but somehow the word hit me harder than ever before:
“With the encephalomyelitis…” my doctor began at a recent check-up, but I have no idea what came after, because that word was all I could hear.
Continue reading “What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS”
As someone with a chronic illness that was once misdiagnosed as a psychiatric disorder, but who also does have mental health issues, it’s a constant balancing act trying to understand my brain while convincing doctors that mental illness is only one of my problems.
For eight years, the conclusion was that I was sick because I was depressed. (Since when did depression cause visible joint inflammation?) Even as a kid, I knew better than to believe that.
I was only thirteen the first time a doctor misattributed my physical illness to my poor mental health, but I knew that I knew myself and my body better than a doctor who’d just met me:
“I’m not sick because I’m depressed,” I growled. “I’m depressed because I’m sick.”
Continue reading “What Mental Health Awareness Means When Chronically Ill”
With Easter Week and Passover upon us, I’ve found myself face to face with the very thing my chronic illness has changed the most: my faith.
For years, I would’ve told you it was the most important thing in my life. All through high school, I was a leader in my youth group and involved in several ministries. I used to read scriptures daily because I wanted to learn more about God. I used to pray often because I wanted to be closer to Him. I even used to be enthralled by dense theological tomes, started to teach myself biblical Greek, and at one point considered going into ministry full-time.
At seventeen, I suddenly developed an extreme case of OCD. I’d already had OCD smoldering in the background of my mind for six years, which I’d concealed from numerous therapists due to shame, but out of nowhere it became incapacitating and all-consuming.
Continue reading “The One Thing That May Never Recover After My Chronic Illness”
After just one stride, I knew something wasn’t right. I’d always run through anything—be it sickness, rain, or depression—but today was different. Today, in the midst of training for my second half-marathon, my whole body felt like it was made of lead, and no matter how hard I tried I could barely pick up my legs.
I shuffled down the road for two miles before the frustration of a terrible performance got the best of me, and I dragged myself home, now dizzy from exhaustion. I went to bed in the hopes that I could sleep it off… Continue reading “The Plot Twist I Never Expected… And How I’ve Learned to Accept It”
Today is World Encephalitis Day, and I want to take a moment to shed some light on a certain controversy within the PANS and encephalitis communities:
Back in 2014, in a matter of weeks, I went from being a typical college student earning straight-A’s to a psychiatric cripple who was afraid to eat and didn’t want to exist anymore. I also lost the ability to walk, was overcome with constant involuntary movements, and couldn’t stay awake for more than a few minutes at a time.
How could a person develop sudden-onset Tourette’s, narcolepsy, bipolar symptoms, and severe coordination problems simultaneously in isolation from each other?
Continue reading “Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS”
Last month, after finishing my first semester of grad school, the dread of having to come back in January to do it all over again drowned out any sense of accomplishment. Although I liked my colleagues, the truth is that I was miserable so much of that fall. And until now, I didn’t know why.
Continue reading “Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?”
Hi everyone, I’m excited to share that tomorrow (Saturday) is the launch of the first-ever teleconference support group for teens and adults with PANS, AE, Lyme and other similar/related conditions. Let this be your official invitation!
Continue reading “Announcement: PANS/AE/Lyme Teleconference Tomorrow!”
For the last twelve years of being sick, I’ve been embarrassed by all of the ways my disease makes me “different” from everyone else. I may try to fit in, but I’m always waiting for the moment when people discover the truth about me.
From not being able to attend public high school, to going to therapy and appointments instead of hanging out with friends, to living with OCD and chronic pain, my experiences as a person with PANS and Lyme have isolated me from my peers when all I wanted was to be “normal” and feel accepted. Continue reading “My Illness Made Me Feel Like a Freak: Why I’m Done Trying to Be “Normal””
I never thought those four words would describe me, especially at twenty-three, but in my first few days as a graduate student, they’ve become a heavy truth I have no choice but to accept—and at the same time, they’ve turned into a statement of empowerment.
In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease. However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms. It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine”
