Author: Anika Kumar
Editors: Katherine Lai, Emily Li
March 3, 2026 at 7:00 AM
For the first 21 years, Christopher Anselmo was completely healthy, with no signs that his lifestyle would be impacted in every way. It was not until after graduating college, where he started to feel some unusual symptoms. One night after going for a run, he noticed he was feeling much more fatigued than usual. His concern only heightened after moving to his new apartment in Boston, when he found lifting the many boxes and furniture far more difficult than before. After numerous appointments and screenings, Christopher was diagnosed with limb girdle muscular dystrophy type 2B (LGMD2B), a rare neuromuscular disease that gradually weakens the muscles.
This shocking news forced him to rethink how he got around, how he ate, and whether he would be able to continue working to support himself. His neurologist broke the news with uncertainty: You'll likely lose the ability to walk within the next 10 years. That moment then marked the start of his physical and emotional journey of learning more about LGMD and his new lifestyle. LGMD is an adult-onset neuromuscular disease and is caused by an absence of what's called dysferlin, which is a cell muscle membrane repair protein. Symptoms of LGMD2B consist of muscle weakness and degradation, starting in the muscles surrounding the hips and shoulders.
After his diagnosis, Christopher had a difficult time for many years coming to terms with the progression of his symptoms. “I struggled for many years to…come to grips with what was going on at the same time as I was dealing with all the physical symptoms” he states. Over time, Christopher lost the ability to run, climb stairs, and stand on his own.
Fortunately, his experience with the healthcare system has mainly been a positive one. Living in Boston, Christopher was surrounded by some of the world’s best research hospitals. During his hospital visits, he saw a range of specialists, including neurologists, pulmonologists, and physical therapists, who used their knowledge to monitor his disease progression, respiratory health, and physical function. Since LGMD primarily affects muscles, it may also affect other body systems such as the respiratory system by weakening respiratory muscles, thus potentially requiring examination from specialists like pulmonologists. However, Christopher’s relatively quick diagnosis is an atypical case in the rare disease community. “In the rare disease world, the path to diagnosis can take really long, and it can be very frustrating,” he states. Many individuals with rare diseases get misdiagnosed as having other, more common conditions and are constantly referred to one specialist after another before finding a diagnosis. Common misdiagnosis occurs because of the varied symptoms that each LGMD subtype may present, and may be mistaken for polymyositis, IMNM, other CK and dysferlin related diseases, and even other LGMD subtypes. For many, this strenuous path takes a toll on their mental health and can be emotionally taxing, involving continuous testing and appointments with no answers in sight.
For Christopher, this meant not only coping with the physical symptoms but also navigating the mental and emotional challenges that came with LGMD2B. At first, he focused on maintaining his strength and independence, as well as managing his motor functions. Gradually, though, the constant testing, appointments, and adjustments gradually began to weigh on him. He began to feel frustrated and drained in ways he hadn’t expected. The initial shock of the diagnosis slowly gave way to feelings of depression as he came to terms with his new reality.
After struggling with low mood and motivation, Christopher turned to writing a private journal, finding that he could reflect on his emotions better by expressing his thoughts in writing. When a rare disease foundation asked if he was willing to share his story, he hesitated at first as writing had been a personal outlet and he had never shared his experiences through pen and paper. Even so, he pushed through the discomfort and tried something new. To his surprise, the writing process felt very empowering, encouraging him to reflect and cope with the changes in his life.
In many of his pieces, he mentions the phrase “I’m fine” as a default response to others when asked about the physical and emotional challenges of his diagnosis. At the time, he didn’t want to confront those feelings or burden others with them. “I felt like I shouldn't have these symptoms or these feelings,” he explained. Over time, Christopher realized that saying “I’m fine” was doing him a disservice. Every time he used it, he ended a conversation that could potentially lead to getting the help he needed. As a result, he continued to bottle up his emotions and carry his burdens alone, triggering panic attacks and intense frustration. Slowly, he learned that opening up, even a little, was far less uncomfortable than the cost of keeping everything inside. “I try to offer up a little more…when I'm tempted to say I’m fine,” he explains. “You don’t have to share every last detail, but you can still let people know that you're not fine.”
Christopher thanks his family and friends for helping him reach that understanding. Their support, whether through checking in, helping with daily tasks, or simply listening, reminded him that he didn’t have to face this journey alone. By allowing him to ask for help and share his feelings, he discovered that the discomfort of vulnerability was far outweighed by the relief and connection it brought. Christopher reminds us that “we're not supposed to do everything by ourselves.” He says that while you can handle things on your own for a while, “having a support system will help you go much further in the long run.”
Building on that understanding, Christopher made big steps towards working through the initial shock of his diagnosis, regaining his high spirits, and learning to ask for support. He then went on to write for the Muscular Dystrophy Association for several years, spreading awareness about the disorder, before deciding to start his own blog in 2013. After realizing how much he learned, Christopher wanted to guide others who had gone through similar situations as him, transitioning his writing to a more “how-to” style. To share what he’d learned from his journey, Christopher started his newsletter, Hello, Adversity (helloadversity.substack.com) in 2023. The more he wrote, the more he enjoyed it, knowing that his writing was able to help people around the globe on their own journeys to solidify their resilience and change their internalized mindsets. He “found a lot of joy in just connecting with different people…[and] getting to understand what's going on in their lives.” Christopher continues to use his experience and share his stories in an accessible manner for his readers.
Residing in Connecticut, Christopher continues to write and advocate, and is currently in the process of self-publishing his book, also called Hello, Adversity. This collection will feature condensed versions of his articles, organized into short reflective essays that share his life lessons, personal stories of resilience, and more.
As he opens up about his journey, Christopher hopes his writing will inspire and guide others within the rare disease community. Looking ahead, he envisions a future where patients are able to receive diagnoses more efficiently, supported by advancements in genetic testing. He also hopes to see greater investment in rare disease research, stronger public awareness, and increased recognition of the seriousness of rare conditions.
