My chronic pain was caused by lupus. I finally received a diagnosis after struggling for over a decade.

• I've had chronic pain for as long as I can remember and have seen numerous doctors for my symptoms.
• After more than a decade, I was finally diagnosed with lupus.

My earliest memories are of doctors' appointments and late nights sitting up in pain. I was diagnosed with gastroparesis, or paralysis of the stomach, at the age of 3, and it wouldn't be long until I began experiencing joint pain as well. My only vocabulary for it at the time was simply that my legs hurt, and they hurt so badly that I often could not walk. Doctors told my mother I was experiencing growing pains, and as I got older the pain would go away. It never did.

When I turned 10 and the pain spread from my legs to other parts of my body, such as my feet, hands, elbows, shoulders, and neck, my mother took me back to the doctor, this time to our family's pediatric rheumatologist. I was diagnosed with something called undifferentiated connective tissue disease, or UCTD. This means that I was exhibiting symptoms of and had the blood work to prove a connective-tissue disease, but my symptoms were not advanced enough for doctors to definitively say what I had. But because of my family history, we were fairly certain I would eventually get a diagnosis of lupus.

Autoimmune disorders run in my family

My brother has Crohn's disease, my sister has lupus, and my mother deals with both. I was following what our family doctors often darkly called the "Cohen family footsteps," but because they weren't able to diagnose me yet, I went without proper treatment.

I struggled terribly with my symptoms throughout my adolescence, and they only worsened after puberty. By the time I was 19, I still had no diagnosis and could no longer hold a job. I'd had enough when I began experiencing horrible pain-induced tremors and nearly fell one day while on the subway. I wanted answers and began reaching out to new doctors on my own.

I saw a few doctors during this search for a diagnosis and treatment. I presented them with my medical history, as well as my family's history of autoimmune disease. I had a few discouraging experiences.

One doctor told me that my symptoms were caused by being overweight, and if I went on a diet, I would feel better. I said that because of my gastroparesis, I already had a very limited diet and was usually only eating one meal a day; the doctor responded by telling me to restrict my eating even further.

Another told me "not to jump to conclusions" about what was going on because of my family history and said that my blood work didn't point to any serious problems. This same doctor then diagnosed me with Sjogren's syndrome based on two of my symptoms: dry eyes and dry mouth. But I knew that Sjogren's didn't explain all of my symptoms — including a malar rash, which is a common symptom of lupus — so I continued searching for another opinion.

I saw another rheumatologist who also diagnosed me with Sjogren's without the proper tests — for example, by having an eye doctor check for excessive dryness of the eyes beyond what's self-reported or doing a biopsy of my lower lip to check for signs of inflammation. Additionally, my dry eyes and mouth were both relatively recent symptoms. The other autoimmune-related issues I'd been experiencing, many of which were left unaddressed by this diagnosis, had been going on for years. While it's entirely possible I had developed Sjogren's in addition to something else, I was growing tired of being told there was no answer to my lifelong struggle with my health.

I kept searching for a diagnosis that made sense

But thankfully, I didn't give up, and I had another option available to me. Since I was young, my mother had been seeing Dr. Michelle Petri, a renowned physician, and Dr. Marisa Mizus, a rheumatologist, at Johns Hopkins. Even though Mizus is based in Baltimore, I made an appointment. I told my rheumatologist in New York about it, and he seemed happy I'd be getting a second opinion.

During my appointment in Baltimore, I finally heard the words I had been waiting on for over a decade. Mizus said that I very obviously meet the criteria for SLE, or systemic lupus erythematosus, given my family history and my blood work, along with symptoms that are common in lupus, including the malar rash and lupus alopecia. She took all of my symptoms into account when diagnosing me, instead of cherry-picking certain ones that aligned with another diagnosis.

I finally felt heard and like I was on track for a proper treatment plan, starting with a steroid injection to relieve my symptoms from a flare-up I'd been experiencing. The steroid injection almost entirely cleared up my symptoms and gave me a quality of life I hadn't experienced before.

When I returned home and met with my rheumatologist in New York to tell him about the new diagnosis, he disagreed and wanted me to choose between continuing to receive treatment with him or Mizus. He told me he wouldn't treat me for lupus, because he didn't believe I had it. It was a tough decision to make at first. I decided to follow my gut and dropped him as my doctor.

I'm getting quality treatment for lupus, but I wish I didn't have to travel 4 hours for it

I'm still in treatment for SLE and still seeing Mizus as my rheumatologist in Baltimore, but I have yet to find a local doctor to work in tandem with her. It can be hard to get an initial appointment with a specialist and tiresome to go through the entire intake process all over again. I've waited many years for treatment and for my disease to be under control enough so that I can live a somewhat normal life.

It's difficult for me that the only doctor willing to listen to me is a four-hour drive away. She's actively treating my disease and taking the necessary steps to get it under control, and she listens to me when I tell her what's going on with my body. I'm lucky enough that I can afford to commute every three to six months to check in with her, but it shouldn't be this way.