Grace

Grace’s first MS symptom was an area of numbness on her leg during college that she couldn’t feel. While that symptom went away, over the next five years little things started to appear that would come and go. During this five-year period, Grace saw many specialists before the appropriate diagnosis was made, including neurologists, orthopedists, and a neurosurgeon. For example, when she couldn’t move her toe, her doctor attributed it to a spinal disc issue and recommended physical therapy (PT). Grace was skeptical of this diagnosis and knew that something was “not right.” Through her employer, Grace switched to a Preferred Provider Organization (PPO) insurance company that allowed her to see a neurologist. MRI testing confirmed that Grace had Multiple Sclerosis (MS). Immediately after this diagnosis, Grace was hospitalized for 5 days. After this episode, all of her MS symptoms subsided for 5 years. She then had a severe relapse and was hospitalized and eventually bed bound for three and half months. Grace calls her MS “the gift that keeps giving” because eighteen months later, she again experienced MS symptoms that required medical treatment. She has not had any major relapses for many years, although she continues to experience symptoms that are not visible to others including fatigue, spinal pain, problems with balance, muscle twitching when tired, and feeling overwhelmed in high information and intense social settings.  If she tries to push through symptoms, Grace experiences an “MS hangover.” She will get tremors and her legs or hands and be extremely fatigued for many days. Grace is taking CellCept and her MS is currently stable.

Not being believed by her doctors and being told that there was nothing wrong was hurtful to Grace. Grace had an aunt with MS and she “knew what MS looked like” and how it could affect people’s family. She was very sad to receive her MS diagnosis. However, the diagnosis also felt like validation that her symptoms were not all in her mind and that there was something truly wrong with her. Her relapses scared her because of the uncertainty about the future that surrounded them. Retiring at forty was difficult for Grace because this meant that she lost the connection with her coworkers and felt a sense of loss that part of her or what defines her was gone. Grace’s family, friends, and church members were extremely supportive throughout the period of initial diagnosis. Grace uses her spirituality to get through challenges in life, including MS. She finds that MS is an isolating kind of disease that affects relationships and has reduced her social circle. Grace lives by herself and has to actively cultivate relationships with people who can help her. She has one aunt and three cousins who are also diagnosed with MS, and they serve as a “built-in support system” who can empathize and provide advice. Grace’s biggest worry about MS is the implications of her cognitive symptoms as she ages. Grace wishes that her doctors would acknowledge and discuss cognitive fatigue and talk to her about how MS can impact the aging process.