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Patient stories are real.
Patient names and images have been changed.
This experience may not be reflective of all patients.
"Suddenly, halfway through my PhD program, I was blindsided by a sudden and unexpected illness: fever, rashes, pain that crept up every limb from the throbbing joints in my hand and feet and prevented me from doing the most basic of tasks."
"I joked to my friends that it looked like someone had beaten my legs with tiny sticks until they were covered with a lattice of small, purple bruises. My feet swelled two sizes. My fingers were too clumsy to even open a bottle of water.
“After several months of inconclusive tests, I was eventually diagnosed with rheumatoid arthritis. I remember the phone call from the doctor. My relief that I finally had an answer for my unreliable body quickly turned to panic. I was afraid that the life I had known up to that point had ended.”
"I spent two years trying and failing multiple RA drugs, never knowing which drug might treat some symptoms but exacerbate others. […] I began to feel that my rheumatologist and I were firing shots into the air and hoping we hit something."
"These years hold some of the darkest moments of my life. I was incapacitated: I had to put my research and teaching on hold; I gave up my yoga and dance classes. I contemplated dropping out of graduate school, moving home with my parents, and applying for disability. I 'failed' one drug after another. I started slowly losing my hair, my independence, and my optimism for a future without pain.”
Patient stories are real.
Patient names and images have been changed.
This experience may not be reflective of all patients.
"I had my youngest child in 1988 and started my masters's degree in 1990. My symptoms started in 1993, the day before my youngest's fifth birthday. I started to get really achy, almost flu-like. I got up in the morning with difficulty moving anything."
"It was the oddest thing I've ever experienced. I remember being in a mall one day with a mattress store inside. I wanted to go in and say, 'If you could just give me a corner to lay down in for a couple of hours, I'll be fine.' It's that bad.
As time went on I continued to work, I continued to be a mother, because if you're not getting better, you just have to go with it.”
"I wasn't a complainer, but people could see that I was suffering. My mother came down a lot of the time because my kids were little. Other moms would take my sons to hockey and my daughter to dance classes. While I appreciated everyone's help, part of me was a little resentful. I wasn't able to be the mother I wanted to be and other people had to step in."
"I don't think anybody wants to admit that they can't do it all. I was taking care of my children, there were deadlines to be met. I would allow myself two hours a night to sleep. Well, you can do that for a while, and then your body really comes back and says, 'If you're not going to rest I'm going to put you at rest."
I had gone to multiple doctors who were unable to give me a diagnosis. I tried many different treatments to get my symptoms under control, but many of them didn’t work for me and I had a hard time tolerating them."
"I was finally given a diagnosis: rheumatoid arthritis. I thought getting this diagnosis would make it easier to find something to treat the symptoms. I was so optimistic about starting a new treatment—and then incredibly frustrated when I could not tolerate it. Again we tried more and more treatments, but still nothing seemed to work. I started to worry. What if nothing could help me?"