Page 24 of My Heart to Find

My heart had sunk. My own ‘friends’ thought I was crazy. It didn’t take long for the doctors to agree with my so-called friends. And I suppose when, a year later, I started hallucinating and developed severe OCD overnight it didn't help my case.

And I was now scared of everything.

I hatedthe psychiatrist I was assigned. All he wanted to do was pump me full of antidepressants and antipsychotics. He said it was all a mental health problem, just like River had said. The psychiatrist said it was a reaction to trauma—though what trauma he thought I’d endured, I still don’t know. Countless hours were wasted in his office. He said I just needed to try a bit harder to overcome the OCD.

Nothing helped. Not antidepressants, not antipsychotics, not the rounds of talk therapy.

My right side was seizing up. Doctors said it was a manifestation of anxiety. Mum argued with them.

“How can this be anxiety?” she’d asked, pointing at the doctor. Her nails had been bitten right down that day, I remember. “Look, it doesn’t make sense! Cara used to be on the cross-country team at school, and at uni she played Netball. She was active, sporty—now she’s struggling to move.”

Under protest, the NHS arranged for a neurologist to see me. He noted weakness on my right side, and I thought that was the moment where these doctors would finally start taking me seriously. But then he said it wasn’t something he would look into because he supported the mental health diagnosis I had been given.

“No one believes me, Mum,” I said one day.

“I do,” she said. “Your dad does. Esme does. The people who matter believe you.” But at that point, I wasn’t sure it was enough. I neededdoctorsto believe me.

I was constantly nauseated, my handwriting had changed, my hair was falling out leaving huge bald patches on the side of my crown. I was in so much pain. My hallucinations of cats wouldn’t leave me alone. I was terrified of everything.

I was depressed—how could I not be? I wasn’t myself anymore—I couldn’t do my sports, had had to abandon my goal of being an illustrator, and couldn’t even play with my dog. My life had fallen down a sinkhole, and I was miserable. Of course this ‘confirmed’ the doctors’ diagnosis that this was a mental health problem. Even though the depression and OCD were symptoms, not a cause. I was sinking in a sea of despair. When I reported new symptoms to the doctors—physical symptoms, because by then I’d made sure not to tell them how I was feeling mentally—they humored me with little laughs. No new referrals were made, because I was just a crazy girl.

Dad had been doing research for months, and he’d printed out more and more scientific journal articles about how Lyme causes encephalitis—brain inflammation—as evidence for me to take to appointments.

“This causes the neuropsychiatric symptoms,” I said. And maybe it was a bad idea, taking evidence in like that. No doctor likes to be proven wrong.

The NHS would not test for encephalitis, even when I brought it up with different doctors at the GP practice. Even when I phoned the neurologist’s receptionist. Instead, it was all reported back to my psychiatrist as ‘further evidence’ that I ‘wanted’ to be ill.

“But this is what I have!” I felt like shouting as I waved Dad’s research.

But the NHS didn’t want me to have it. They didn’t want me to get better, that’s how it felt.

Mum and Dad sold their shares of the business they ran with my aunt and uncle—my aunt and uncle who no longer let me see my cousins for fear they’d ‘catch’ my madness—and my parents got some money. We went privately with Dr. Singh, a doctor who said he could diagnose encephalitis caused by chronic Lyme disease, and arrange for the tests to prove I had chronic Lyme—and, crucially, he could treat it too.

I took long trips to London by train, where I went to private clinics and had my blood drawn for expensive lab tests that would be done in Germany and the US.

The Cunningham panel sent to Oklahoma detected high levels of auto-antibodies attacking the receptors in my brain, specifically the Basal ganglia. Proof of encephalitis. The private doctor told me this is commonly caused by Lyme disease and that my Armin lab results, the ones from Germany, showed my body was fighting an active Lyme infection.

It was amazing that moment knowing that I wasn’t really crazy, not that there’s anything wrong with being crazy, but knowing that there was a doctor on my side and that I could get better was wonderful. It’s a long process, years and years. And I’m right at the start of the treatment now. Only a couple months in.

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