When I first greet Tracy, I notice she’s wearing a blue long-sleeved shirt, a puffy black vest and a pair of comfortable boots. She’s lounging on one of the two brown, leather chairs in her living room and I take the seat next to her. Today, Tracy is all smiles and seems to be having a good pain day. Unfortunately, just 48 hours ago, she experienced a flare so terrible that she couldn’t even sit down without being overwhelmed by excruciating pain.

Although Tracy may seem like your typical, 24 year old college student, right now she’s juggling a lot more than just school and a social life. At the age of 11, Tracy was diagnosed with Reflex Sympathetic Dystrophy (RSD), a disorder that “sends misfirings to the sympathetic nervous system which indicates to the brain that you’re in chronic pain.” This causes Tracy to feel a burning sensation throughout her entire body and can, at its worst, incapacitate her.

However, that’s not even the tip of the iceberg. This past year, Tracy was also diagnosed with a “movement disorder that causes severe muscle contractions.” Although she had been experiencing symptoms, such as toe curling, for over a year, she attributed it to the RSD. In September of 2015, things took a turn for the worse when she was hanging out at home and her "body locked up” and she “couldn’t move any limb and was having continuous charley horses.” Her mother then called 911 and she was taken to the hospital. She had to be carried from the couch to the ambulance because the pain was so terrible that she couldn’t walk or even speak. A week later, Tracy received her diagnosis—dystonia.

The type of dystonia that Tracy has is called "functional dystonia" which means she can still complete daily tasks even though her “body is still locked up at times.” That said, she lives in chronic pain and becomes exhausted very easily. In fact, as a result of the dystonia, Tracy lost her ability to walk due to “the severity of the contractions” in her feet. At one point, she says, “My toes were touching the back of my foot.” This complication landed her in a wheelchair for about five months and also required her to “take a medical leave from graduate school” where she was in her last year of completing her master's in social work. When asked why she chose to study social work, Tracy answers, “I always knew I wanted to help people.”

Unfortunately, at the moment, there are no cures for RSD or dystonia and Tracy is aware she will have to live with both for the rest of her life. However, there are treatments that can help minimize her symptoms. Tracy’s current treatment consists of medication, Botox, ketamine, physical therapy, working with a therapist, a pain clinic, a chiropractor and a neurologist. Despite being bounced around from doctor to doctor for four or five months because her “case was too complicated” or it was “all psychological,” Tracy finally found a team that works. She says, “It took a long time and a lot of patience but I finally have a team who has a plan and agrees that there is hope for me.” And hope there is.

When I ask Tracy about what she plans to do with her future, she smiles and says, “Hopefully, becoming a guardian ad litem and working along with the Department of Children and Families.” She also declares, “I’d love to be married with children and have my own therapy dog.” Tracy’s optimism is contagious and she brightens up when she speaks about her future as both a social worker and wife. When I ask her how she’s managed to stay so positive throughout this whole ordeal, she answers, “I always kept reminding myself that tomorrow’s a new day.” She talks about her “amazing friends and caregivers” and says that her team of doctors “have helped encourage [her] to stay positive.” She also reveals that her father and her boyfriend have been key figures in helping her pull through.

While Tracy, herself, is a ray of sunshine, she admits that getting through the day isn’t always easy. Sometimes her pain is so bad that she’s “unable to move” at all. On those days, she says, “All you can do is cry.” She divulges that on bad pain days the contractions are so severe she wobbles and has a hard time completing daily activities. Just “getting up to use the bathroom is one of the hardest tasks.” Tracy reveals that on her worst days, “everything hurts” and even wearing clothes “is extremely, extremely painful.” She explains how even the lightest of fabrics can make her feel like she’s crawling out of her skin when she’s flaring up or having a muscle spasm.

Amazingly, in spite of this, Tracy remains strong. She’s resilient, thoughtful, optimistic and courageous. She takes the good with the bad and she announces that her life motto is “giving up is not an option.” She tells me it’s her favorite quote and it’s quite clear she lives it out daily. As I’m wrapping up our interview, I ask Tracy what advice she’d give to someone who’s just beginning the journey she’s now on. She thinks for a second before responding, “Do not give up on looking for the right doctor—everything is trial and error with treatment options—and remember to keep an open mind."

If you would like to learn more about RSD and/or dystonia, you can go here or here.