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Coping with the stages of a debilitating illness

It was September 19, and I was sitting on my bed in the apartment I had rented with my best friend, having just arrived back in the country after a summer working at a lab in Vienna, Austria. I was starting my senior thesis, and I was seeing a very pretty tattooed man. As far as I was concerned, life had never been better than this.

I was sitting on my bed, eyes trained on my computer screen, and a nerve in my left tricep started hurting. Over the next few hours those few inches of pain in my tricep glided insidiously down my arm, past my elbow before sweeping down my radius and lodging firmly in my hand and fingers.

I remember everything about the exact moment when my old life ended and my new life began.

An emotional transformation happens when you develop a debilitating chronic illness. The stages may look a little different for everyone, they may last for different amount of times, and - not unlike the stages of grief - just because you’ve moved from anger to bargaining doesn’t mean you won't feel angry again. I’m often angry. 

The first stage I encountered is the “There’s-Nothing-Wrong-With-Me” Stage, a stage that is frequently reinforced by doctors, friends and family. They said to me, “Well, your pain rating is less every time you come in, we’re pretty sure you’re getting better,” and “We all have our aches and pains sometimes,” and “I’ve seen this before, it goes away in a couple months or years.”

I am a high intensity person and was a high intensity student. I held a job, had a social life, worked hard on my academics, sat on many committees. But suddenly I was spending weeks in Percocet-induced hazes, I couldn’t drive because my hand hurt too much to hold the steering wheel, I forgot meetings and appointments, took midnight ambulance rides to the ER and knew the location of every 24-hour pharmacy within 40 miles. 

So I crawled into the “Fix-It” Stage. I became convinced that if I just knew what was wrong with me that there would be a diagnosis waiting along with a cure.  

But at some point I had seen about a million doctors for 15-minute appointments that ended before I could barely finish telling them my medical history, and I had to start traveling two hours to Boston to see better doctors. This stage wore me down.

After living in the constant vigilance and disappointment of the “Fix-It” Stage, my emotional exhaustion took hold of me, and I fell into the coma-like “Loneliness” Stage. It dawned on me that all these friends I had were suddenly starting to seem like the ghosts of friends past, acquaintances, fictional characters sending terse and dismissive text messages rather than the wonderful people who threw me a birthday party, or made me a mix CD the semester I fled to Canada, or bought me ice cream during my last breakup.

Finally, like the rolling back of clouds after a storm, I started to emerge from the “Loneliness” Stage. One evening this winter just over two years into my disorder, I made myself a Chronic Illness Blog and an Instagram account with the same theme, and finally I joined a Facebook group.

This is the “Searching-for-Community” Stage. Suddenly, I was surrounded, albeit virtually, by hundreds of people near my age from around the world who were also sick, who also lived in pain, who had lost jobs, or partners, or friends or families because of their health. Suddenly, my glowing screen was overflowing with a group of people who implicitly trusted what I had to say about my body.

It’s been two and a half years since I got sick. What started as pain in my left tricep has turned into intermittent full body pain, extreme exhaustion and smidgen of memory loss as a side effect of a medication. Doctors have never been able to find out what is wrong with me. Of the rare disease community I am part of, a small subgroup that lives in painful mystery, always wondering if one day medical science will have the tools to figure me and the rest of us out.

Like any scrape that turns into a scar, any good relationship that ends badly, like any major life experience, you can’t be who you once were. Some days I crave the control I once had. But today I have the world’s sweetest cat snoring on my lap, an amazing man sitting next to me, one who knew I was sick when we met and nevertheless chose to be my partner even if it means he has to do my dishes (his least favorite chore) every once in a while. And I have a new community, a community that says point blank “You don’t deserve what’s happening to you, your anger is legitimate, but you do deserve to be enveloped by happiness, support and love and we’re going to give that to you.”

We've partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on this patient-focused series. Once a month, patients affected by serious and often rare diseases share their unique stories.

Emma Opitz is 24 years old and living in Western Massachusetts. Originally from Utah and Montana, she is the daughter of prominent pediatric geneticist John M. Opitz, MD, and fetal alcohol syndrome specialist Susan O. Lewin, MD. Emma has a degree in neuroscience from Hampshire College and currently works at an alternative school. She is active in her work on her Instagram for her project the Chronic Pain Portrait Project, a series of photographs about the places in her body she hurts the most every day, and her Tumblr about her illness, Left Not Abled. In her spare time she embroiders, a task that her best friend, Poppy the cat, loves to help with.

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