10 Ways to Feel Less Hopeless When Chronically Ill

“I just can’t keep going.”

“I feel completely hopeless.” 

“How can anyone live like this?”

These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.

Continue reading “10 Ways to Feel Less Hopeless When Chronically Ill”

Why I’m Doing Better Than I Think

These days, when friends ask how I am, I tell them I’m fantastic—and for a moment, I almost believe it.

I tell them about my new projects. I tell them about grad school in the fall. I tell them about a professional development program this summer. When I talk about everything I’m doing, I fool everyone—even myself—into thinking I’m healthy. Continue reading “Why I’m Doing Better Than I Think”

How I Finally Made Peace with My Lyme Diagnosis

“Close your eyes,” the Lyme specialist said. “And hold your arms out straight.”

My body began to jerk while I stood in front of the exam table with my arms extended. As I strained to stop the involuntary movements, I could sense my parents’ dismay even through my eyelids.

Continue reading “How I Finally Made Peace with My Lyme Diagnosis”

Is There Hope in the Unknown of Chronic Illness?

Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.

It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over. Continue reading “Is There Hope in the Unknown of Chronic Illness?”

Not About Symptoms: The Truth on PANS/Lyme Recovery

When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.

When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality. Continue reading “Not About Symptoms: The Truth on PANS/Lyme Recovery”

Attacked, Trapped, Tormented: My War with PANS & Anorexia

“Do I have to take my shoes off?”

I asked my psychiatrist in a trembling voice as I stared at the floor, too ashamed to make eye contact.

My hands were shaking as I reached for my shoestrings, because I already knew the answer, and I knew what would happen the moment my doctor saw the double-digit number on the scale… Continue reading “Attacked, Trapped, Tormented: My War with PANS & Anorexia”

I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…

I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend.  I remember thinking, I can’t possibly be sick enough to have Lyme Disease.  What am I doing here?

Continue reading “I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…”

Is This a Nightmare Come True?

Sometimes, you don’t get to wake up from your nightmare…

Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.

As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”