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The First Time Someone Believed My Illness Was Real

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The Mont Saint Michel cathedral in Normandy, France is a dazzling sight. It’s perched on a mountain above the ocean. The tide floods around the base each day, leaving it safe from siege in years past. It’s been added onto in different times in history, creating a time capsule of multiple eras. With so much history there, it only seems fitting that my life would change direction on those cobblestone streets.

I entered in the late morning, beating the frenzy of tourists. The entrance was manned by two men with automatic weapons. They’re a modern edition meant to combat the colossal spike in terrorism France has been experiencing. The streets leading up to the cathedral are narrow and steep. The shops and restaurants on both sides are still plenty busy in the morning hours.

I toured the cathedral with a group in a state of both exhaustion and awe. I swear I walked up at least 10 flights of stone stairs. With my chronic health problems, it felt like 10 thousand.

I stuck close to with a good friend named Mary. I was hiding my pain as best I could, but it was becoming unbearable. Fatigue was snaking its way around my bones. I was close to collapsing.

Mary was running up the steps, eager to explore. Her exhilaration was appropriate. Mont Saint Michel is stunning. The smell of the sea, the view from the cathedral, the tiny men and women below riding horses across the beach, and the vivid and towering architecture…it was a once in a lifetime experience, and I was stubbornly refusing to listen to my body. I was going to see this site if it killed me. For once, I would not be a burden. For once, I would stop worrying about my health.

Looking back, I shake my head, because pure determination never cured a chronic illness. You can only fake a smile for so long. When Mary ran up those steps, I felt something deep inside crack. I couldn’t go any longer. My body was screaming for relief. I had pushed too far and then pushed some more. I lowered myself onto the stone steps of that cathedral, and I cried. I saw my body’s need to stop as a personal failure. Those years of doctors telling me negativity and stress caused my pain had never really left me. At the time, I didn’t have a diagnosis yet. All I had were my symptoms, which no one believed were genuine. I was labeled a “head case” and I began to believe I was one.

If I just ignore the pain, if I just look at this positively, if I just keep pushing…just, just, just.

It was the most harmful and devastating lie I’ve ever been told, and it came from the mouths of doctors, the professionals society conditions us to trust.

Truthfully, sometimes doctors are so wrong it’s almost criminal. Healthy people don’t like to hear that. I think it’s because it scares them. Scares them to think that one day, they could wake up deathly ill, and doctors will roll their eyes and dismiss them. And they are right to fear this. I have experienced it time and time and time again, and it changes you.

Everyone who’s been through it doesn’t come out the same. I became jaded. I was no longer fazed by the words, “You’re just an over emotional, under adjusted teenager who needs to go outside and socialize” or, my personal favorite coming from a specialist, “Why were you even referred here?” It became my accepted reality. Like a person beaten down time and time again, I began to believe in some strange way that it was OK. I deserved this.

I was mature for a 16-year-old, but I was still young and impressionable. I thought that maybe I really was crazy. Maybe I was making it up for attention. After all, that’s what everyone in my life was telling me, save one or two. That’s how stupendously the medical community failed me. How, as a girl and later young woman, I was led to believe doctors were never to be questioned. I began to doubt my own sanity over doubting the doctors’ competence.

I sat on that step in Mont Saint Michel, and I was believing all of those lies. Mary stopped and came to see what was wrong. I told her that I couldn’t go on. Mary began walking me down without hesitation. I felt tremendous guilt.

“I’m ruining this for you.” I said.

It was my fault. I was sure of it. We had made it back down to the cobblestone streets. My knees were wobbly. The descent was steep. I was afraid my knees would give out, and I’d fall. It was not an irrational fear. It’s happened before. I was trying to explain my pain to her, feeling utterly inadequate. I desperately wanted to be understood. She said something I will keep with me as long as I live.

The kind soul that she is, Mary turned to me and said something along the lines of, “It’s OK. I know you’re not faking it. You don’t have to prove to me that you’re in pain.”

I stared back in numb shock. I realize now, at that time, I no longer believed in empathy. That’s how degraded my view of humanity had become. I didn’t understand why or how someone would believe me, let alone care. Her words circled through my head for months, and even now, they often return to me.

“You don’t have to prove to me that you’re in pain.”

All I said in return was, “Thank you,” but I wanted to say so much more.

She changed my life in that moment and didn’t even know it. In fact, neither did I. But it was the first time someone had believed me without question. It was almost like a seed that was planted in my head and in my heart. As I grew to realize my own worth and finally received a diagnosis, those words have become a motto for me.

I don’t have anything to prove to anyone. I don’t have to prove my pain to a doctor or anyone else. If they’re going to judge based on my “healthy” appearance, that’s on them, not me. I can finally say that.

As this story comes to an end, I’ve realized I’ve never told Mary how her words have stayed with me. I think that the next time we sit down for coffee, I will. If there were more people like her in the world, chronic illness wouldn’t be as alienating.

I thank God for you, Mary.

Follow this journey on Katrina Quarry.

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Gettyimage by: DragonImages

Originally published: January 31, 2018
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