When I was younger, I used to lie a lot—10 times a day, maybe more. It went like this:
“I really wanted to go to your sweet 16, but I think I have the flu,” I would say with all the sincerity a high school freshman could muster.
Sometimes when I showed up on Monday morning to school, my friends would comment on my lack of a cough or nose rubbed red and raw. I must be feeling better, they’d say.
“A lot better,” I would agree. “Guess it wasn’t the flu.”
It wasn’t. My illness didn’t come with a sniffle or any other noticeable signs. Instead, it was hidden from everyone but me. Known as invisible illnesses, disorders like chronic pain, arthritis, gastroparesis and many others are characterized by moderate to severe health issues.
But it’s impossible to tell someone is suffering from one of these disorders without an explicit explanation, which often makes the sufferer feel just as invisible as their sickness.
Mine went like this:
A horseback riding accident in middle school badly injured my right shoulder. I insisted the pain wasn’t that bad because I was scared of what would happen if I told the truth. The situation got harder to lie about: four doctor appointments when the pain got worse—not better, two weeks in a sling, six projected months of physical therapy that turned into two years.
One day, the pain was particularly bad, a deep, shooting sensation that went all the way into my hand, and my therapist said, “That shouldn’t happen.”
The next week, I saw the shoulder surgeon for the first time. This was hard to lie about, I discovered, especially when you are 14 and missing three weeks of school for recovery.
After everyone forgets about the surgery, there’s only so many times you can say, “I had a cold,” instead of, “I missed four days of school because I think about the Percocet in the cabinet every 20 minutes and I’m in too much pain to move.”
When the shoulder surgeon did his checkup a few months later, he told me I had regained an impressive percentage of my movement back—before the surgery, my right arm stayed close against my side like a broken wing.
But he diagnosed my pain as chronic.
That was fine, I told myself. I was used to the way the pain dug into my shoulder like steel talons, the way I had almost fainted once or twice when I moved the wrong way. I didn’t even remember what it was like to not be in pain. What was the difference?
But for some reason, the pain spread. The doctors claimed to understand, said there was research for this kind of thing, but I wondered if they were lying, too.
“I thought you only had a shoulder injury,” people would say. “Why would that make the rest of your body hurt? Can’t you just take some Motrin?”
“You’re right,” I would answer. “I’m fine.”
Maybe they were right. Maybe it was all in my head. I adjusted the lies.
It went like this:
I look fine, so I must be fine. I’m fine. I’m fine.
I was not fine, the doctors at the Children’s Hospital of Philadelphia told me five years after my initial injury. I had Amplified Musculoskeletal Pain Syndrome, causing parts of my brain to misfire pain signals throughout my body, overreacting to the smallest of triggers and depriving my muscles of oxygen.
Upon hearing the diagnosis, my physical therapist said, “My last two patients with AMPS were in wheelchairs. You’re lucky.”
Lucky? I didn’t feel that way. Maybe if I were in a wheelchair, people would see how serious my pain is. Maybe they would understand. It’s an incredibly twisted, ungrateful thought—but that’s the funny thing about intense, constant, indescribable pain.
And that’s the funny thing with invisible illnesses. It’s usually non-lethal, which you’re supposed to be happy about, but most of the time you just wonder why your illness doesn’t even have the decency to kill you.
My illness didn’t, which meant I was fine, or so I told myself, ignoring the intensity of my pain for another three years before I had to drop out of my dream school, move home and hold in my hands what I was sure were the remnants of all my broken dreams. The shards cut my palms and I finally allowed myself to acknowledge it hurt.
I surrounded myself with others who acknowledged the pain, the illness that preferred to stay elusive and invisible: family, friends, my doctors at CHOP and later, a therapist and acupuncturist who probably saved my life.
Now when the pain creeps into my bones, dark and deep and lonely, it goes like this:
I am not fine. That’s OK. Maybe tomorrow.
Victoria Mier can be reached at firstname.lastname@example.org or on Twitter @victoria_mier_