On June 20, 2013, the first pain specialist I had ever seen told me, “You are entering the beginning stages of the world of chronic pain.” And I bawled my eyes out.
Backtrack to eight months prior: I had just graduated from the Fashion Institute of Technology in New York City with a degree in International Fashion Merchandising with honors. I was styling for major magazines and celebrities, and I landed my dream job for a major designer doing sourcing, product development and production. I was one of the rare few that genuinely enjoyed my job. I loved what I did and wouldn’t have traded it for the world.
A few months after I began working, I became obsessed with the position. I was a total workaholic, and at some point, I completely stopped taking care of myself. I was no longer eating well, exercising or even sleeping. I got to the point where all I was doing was working, showering and ordering take-out every night. I stopped seeing my friends and tried to nap in my limited spare time. When February 2013 rolled around, it all came to an abrupt halt.
I woke up one Sunday morning in February that I will never forget: I couldn’t move my neck without an excruciating pain radiating down through my shoulders. I was transferred to the Emergency Care Unit of Hospital of Joint Diseases at NYU.
Little happened at the ER, aside from being pumped up with hard painkillers, anti-inflammatories and muscle relaxants. I was still vomiting by the time I was discharged. I was then sent to a myriad of doctors who tried to figure out what was wrong with me. Some had ideas (that were wrong), treated me for their diagnoses and ended up discharging me, telling me I was crazy or that the symptoms were all in my head. This happened several times.
It got worse. The pain continued to travel down my back, the sides of my spine, through my neck—it was excruciating. To add even more devastation to the pain I was experiencing, I was forced to leave my beloved life in Manhattan. My paid disability leave ran out at my job and the lease on my perfect East Village apartment ended. I had to leave my dream job, pack up my apartment, and say goodbye to all my friends, then move home to Pennsylvania with my parents indefinitely. I was a mess. I was 23 years old and felt like my life was spiraling out of control.
At that point, I couldn’t even sit down for 10 minutes without crying from the pain. If I took a car ride for more than 30 minutes, I had to make a bed in the backseat to lie down. I couldn’t drive. I didn’t have friends at home. I was insanely depressed and was alone most of the time, essentially on house arrest because of the pain for months at a time. Brain fog from pain was so bad that I couldn’t concentrate on anything. I was rapidly gaining weight. I couldn’t cook for myself. I was so poked and prodded from so many blood tests from all of the different doctors that I looked like a drug addict. As I recently learned, I have metabolic issues with most drugs, so trying all of the new meds I was being prescribed by these doctors constantly made me break out in then-unexplainable rashes, vomit, and I’d get dizzy to the point of being unable to stand.
After seeing rheumatologists, GPs, physiatrists, PTs, sports medicine doctors, geneticists, neurologists, pain specialists, endocrinologists, and orthopedic surgeons, I was still not getting anything useful from anyone. I had a posse of residents following me around the hospital and calling me 24/7 to ask me questions. Nurses would make little cracks about “Erica and her entourage.”
I was in so much pain that I was willing to try anything, including hypnotists and private meditation counselors. But it was finally decided that I had tried enough, and the only step left was to go to Johns Hopkins Hospital. I managed to get an appointment with the top pain specialist in the country, and in July of 2013, he diagnosed me with Chronic Myofascial Pain Syndrome, Hypermobility-Type Ehlers Danlos Syndrome and hypothyroidism. With these diagnoses he told me, as gently as he could, that there was a good chance it would never get better, and that there was a serious possibility I might never work again.
This ignited in me some serious determination. I told myself that I would get better no matter what and that some day, no matter what it took, I would work again. After rounds of new (more effective) drugs, physical therapy and weekly trigger point injections, I started to (finally! miraculously!) make some improvements. It wasn’t an easy feat. This strategy was absurdly taxing, both emotionally and physically. Everything was painful, but I very slowly improved.
I now get trigger point injections every month, and I work with a personal trainer that specializes in chronic pain, massage, reiki, therapy, chiropractic work and acupuncture on a regular basis.
I decided the best way to get my career back on track would be to attend a short masters program to show potential employers that I am still both relevant and capable. I also knew that a masters program would be an easier transition back to work after being mostly immobile for three years. I have always been an all-or-nothing kind of gal, so I decided to apply to a competitive one-year masters program at London College of Fashion to study Fashion Design Management with my focus on sustainability and ethical design practice. I knew it was unlikely, but I also knew I would kick myself for not at least trying to follow my dreams after such a painful and depressing time-out from my beloved career in Manhattan, which felt like a lifetime ago.
To my delight, I was accepted! With the most accessible and generous disability accommodations available, I will be moving to London and attending LCF in the fall and I have to admit, I am pretty damn proud of myself.
Not many people can relate to all of this. The fear, the immaculate planning, the general anxiety, the stuff you have to put up with from doctors and the judgment from people in general. I lost many good friends in this process—even people I thought I was really close to. The last two years have been gruesome, not just physically but psychologically. Watching all of your friends grow in their professions and their relationships—their lives overall, really—is hard to watch from your bed.
The coming year will undoubtedly be full of challenges and obstacles. Sometimes I feel like that’s what my life has become—a constant battle between what my mind wants and the more limited capabilities of my body. Prioritizing the things you want to do with the things you can do can be hard. But I can’t give this up. I will find a way to make it work.
