5 Things A Serious Misdiagnosis Taught Me About Myself

OK, it happened.

It’s been nine years, and I’m in my mid-twenties now. I was 16 when, one Monday morning at work, I found I had trouble getting off the toilet.

It sounds silly, but that’s how it started. A pain in my upper legs that was a vague weakness. I had just graduated high school a year early and was starting my summer as a nanny for a little boy with autism. I paid no attention to the weakness. 

It got worse. By Friday, mere days later, I couldn’t walk up the stairs. Three weeks later, I was in so much pain I wasn’t sleeping, I had an irregular heartbeat, and my legs were swelling. I was first misdiagnosed with Lyme’s disease and placed on antibiotics, which made me even sicker. I was later misdiagnosed for the second time at one of the best hospitals in the country in Baltimore, with an autoimmune disease called dermatomyositis. I remember sobbing while a team of doctors stood in front of me and told me the news — I wouldn’t actually get better. I would be sick forever.

I lived with this diagnosis — and all of its treatments — for over four years. This meant chemotherapy, prednisone and a host of other medications. Eventually, my immune system was so suppressed that I got “better.” I relapsed twice in those four years, and at the age of 21, I was told by a reputed doctor in Annapolis that I’d be on chemotherapy for the rest of my life.

Never did I feel more hopeless than I did that day. I walked out of the doctor’s office thinking, “This is not my life. This can’t be my life.” I needed someone else who could help me.

So after a lot of research, I found a herbalist who agreed to see me. During our second visit together, she suggested gluten could be what was causing my symptoms. I hardly knew what gluten was— “Doesn’t that cause stomach problems?” I asked. I thought she was crazy.

But her idea stuck with me. And, after over four years of being sick, I was desperate enough to try anything. I stopped eating gluten and within a week, all of my autoimmune disease symptoms were gone.

Nearly five years after finding out the truth about my illness, I still remain drug-free and totally fine. Sometimes it seems like all that I went through was for nothing — but the biggest misdiagnosis of my young life taught me some fundamental things about myself.

1. I Am Ageless

During the summer I was diagnosed, I was so weak from my immune system attacking all my muscles that there was little I could do for myself. I couldn’t walk. I couldn’t feed myself. I couldn’t even clean myself. I got all my hair cut off because I was too weak to wash it or care for it. During the summer I was in a wheelchair when I turned 17, I learned this important thing about myself—age truly is just a number.

I was mistaken for a cancer patient because of my weakness and short hair. I felt like an old woman, a feeling that, to this day, sometimes claims me. I was in more pain than I’d ever think I’d be: my muscles were basically breaking down. I was not a teenager anymore — I was an old woman, grumpy, frail, and in pain. I realized that my physical age has little to do with my emotional age, and I have more compassion for those who, in my eyes, are not far ahead of me on the age scale.

2. I Am Fallible

What 16-year-old doesn’t think they are on top of the world? I had just graduated high school a whole year early. I thought I had plenty of time to figure everything out — before my world crashed two weeks later with the onset of that strange muscle pain.

My illness taught me that I am going to fall in life — I am not perfect. I went from being a beautiful young woman with long blonde hair to a sick overweight girl with a rash in a wheelchair. I learned an important lesson — my body does not come without cost. We need to take care of our bodies to help them be strong and healthy. I wasn’t health conscious at all before my misdiagnosis; now, food is sacred to me.

In life, we live and learn, and to learn, we need to make mistakes and have experiences. This experience that taught me that I was fallible was so hard—but the lesson was so important.

3. I Am Strong

Sure, I didn’t feel strong when my mother had to help me in the shower, off the toilet, and lift me out of bed. I didn’t feel strong when I was whimpering in pain in that hospital bed. I definitely didn’t feel strong when I first started to walk again and taking mere steps would exhaust me. But my illness taught me that strength is something more than your body — strength is measured by spirit.

It wasn’t easy to even want to come back from my illness. There were numerous points, from those first weeks I was sick to the pain of my relapses years later, that I felt like I just wanted to die. I wanted to give up. What point was there in living a life full of pain and sickness?

As I recovered, I learned that I was strong and that my body was still full of life. I had hope that there was something else on the other side of this nightmare that was my life: and that gave me the strength to keep going until I found it.

4. I Am Significant

Despite the attention, gifts, and cards I received during my illness, I didn’t feel important. When it took my entire family to care for me day after day, I felt pretty worthless. I couldn’t work. I couldn’t even consider school. It took all my energy to take my medications and feed myself every day. But through feeling meaningless, I learned that I am significant, and I have something pretty huge to share with the world.

In some way, I matter. My existence is not pointless. It wasn’t then and it isn’t now. Now, I realize what food can do to our bodies. I know what was causing my symptoms. I recognize how huge my message is and how much of an impact I can make in this world. Even if I hadn’t gotten sick, I would still be significant — but I may not have realized it in the same way.

5. I Am Happy

Of course, I was miserable. I was nauseous all the time. I lost friends. I cried in public. The closest people to me were my family and the nurses at the infusion center. I gained fifty pounds from all the medications. I had acne, stretch marks, and couldn’t get out of bed most days. But I was able to appreciate all the little things about life and the joys that make us happy.

Flowers from my grandmother’s garden. My brother reading me a Goosebumps book. That first shower by myself — it felt amazing. Going to my dream school, five years after my misdiagnosis. Adopting my rabbit Nadir. Meeting my fiancé on a cold November night. Moving to the south, just like I always wanted to. These are the things about our lives that make all the struggles worth it. 

Today, I am so appreciative of the life I have and how far I’ve come since my misdiagnosis. Am I mad about it? Not anymore. It’s hard to be mad when I have so much to be grateful for. As my herbalist said, this is my journey, and I haven’t wasted a second of it.