Healing from Pain and Doubt: The Power of Putting Health First

By Sara Walsh

He hadn’t fallen or even landed strangely—he had simply been jumping rope during recess in third grade—but Devin Goldstein, now 22, instantly knew something was wrong. He would later discover he’d experienced a debilitating knee dislocation—the first of numerous dislocations to come.

The experience also marked the first time Devin’s pain wasn’t taken seriously, which would become a years-long pattern. After recess that day, a school administrator called Devin’s mom suggesting he stay at school, insinuating he was overreacting. Devin’s mom, his biggest advocate, replied, “If my kid says they’re in pain, I will come.”

Although Devin went to the hospital soon after the incident, he had to wait until college before receiving an official diagnosis of Ehlers-Danlos syndrome (EDS), a disorder that affects the connective tissues in the body, characterized by hypermobility and leading to joint dislocations, stretchy skin, and tissue fragility. EDS had been the cause of Devin’s physical pain that day in third grade, and would be for many instances of pain to follow.

ENTANGLED FORMS OF PAIN

Invalidation of his pain during his formative years is part of the reason Devin is mindfully vigilant about cultivating his quality of life as he navigates “severe, constant” pain. EDS is only one of the chronic conditions Devin manages today, conditions whose symptoms can interact, affect, and amplify each other.

Besides EDS, Devin has postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia, where changes in position often cause a rapid increase in heart rate; occipital neuralgia, which affects the nerves running from the space where the spinal column meets the neck, up to the scalp at the back of the head; chronic migraine and cervicogenic headache, a type of head pain associated with neck movement; temporomandibular joint (TMJ) disorder, an inflammation of the joint that connects the jawbone to the skull; and mast cell activation syndrome, characterized by an abnormal accumulation or activation of mast cells, a type of white blood cell instrumental in the body’s immune response, which causes symptoms of anaphylactic shock.

While searching for answers, Devin routinely experienced discrimination and invalidation. He believes the disparities he faced at different points stemmed from the fact that he is transgender and Jewish. Devin discovered that when a white cis male friend or family member accompanied him to the emergency room or doctor visits, he was taken more seriously.

Devin continues to work to remedy the challenges of discrimination in health care and pain treatment. However, he knows the importance of having a supportive framework for his health in place: taking care of himself first allows him to more deeply and truly live the life he’s working toward.

A fierce supporter of patient agency and rights, particularly among the transgender community, Devin states, “Trans people have higher cancer rates because insurances don’t cover the needed testing for gender-specific cancers once their identity is changed from their birth sex. None of this is because these groups are more unhealthy or don’t take care of themselves.”

PRIORITIZING LIFE

After the jump rope incident in elementary school, Devin’s symptoms multiplied. In addition to more dislocations, he experienced an increase in fatigue, joint pain, and sensitivity to light, which later morphed into a stabbing sensation throughout his face. Attending boarding school for high school, he encountered a familiar reaction: disbelief. He recalls, “I started having trouble getting around the campus. I was told this is puberty; this is just what happens. I started not being able to get through the day without naps or lying down.”

During one visit to a hospital, he met a rabbi who shifted his perspective about his Jewish identity. The rabbi spoke about Judaism’s “life before all else” tenet, namely that quality-of-life decisions transcend the religion’s rules, laws, or expectations. For example, if a person were struggling to maintain a healthy weight, as Devin did due to then-undiagnosed facial pain, then during Yom Kippur they should forgo the holiday’s typical fasting: the person’s well-being is the highest priority.

Today, the rabbi’s teaching continues to be a compass in Devin’s life: “He helped me to make the decisions I needed to make my quality of life better instead of seeking to look as healthy as possible externally, even if I was struggling internally.”

STAYING VIGILANT ABOUT WELL-BEING

Dislocation of the joints in Devin’s ear and a breakdown in cartilage, another complication of EDS, led to multiple surgeries and loss of hearing.

That’s one reason Devin chose to attend college at Gallaudet University, a Washington D.C. school for individuals who are Deaf and hard of hearing. One day during his freshman year, he seized and passed out in his dorm due to anaphylactic shock, a result of his not-yet-diagnosed mast cell activation syndrome.

Devin’s EDS, at that time also still undiagnosed, caused him to dislocate a shoulder during a seizure; the severity of the tremors also led to crushed nerves. Ultimately, he had surgery to repair the damaged joint and surrounding tissue.

After years of dislocations, persistent fatigue, joint pain, and facial pain, Devin finally began getting answers and explanations for his conditions. A specialist in pain medicine and management at Weill Cornell Medicine in New York diagnosed Devin with hypermobile EDS and occipital neuralgia, later enrolling him in a trial treatment for peripheral nerve stimulation, which significantly diminished Devin’s facial nerve pain for several months. Describing his years of pain as constant background noise, he explains that the nerve stimulator replaced it: “It was more of a neutral background noise. It was like someone changed the channel I was listening to—I liked this one better. There were significantly fewer days of 9-out-of-10 pain.”

Because of the hypermobility of EDS, Devin’s jaw has dislocated so many times that he began wearing permanent bracing. He now also uses a feeding tube after years of struggling to eat without pain, even with a liquid diet, and maintain a healthy weight. The tube also helps with taking medications.

Devin found care he could trust at Mary Free Bed Pain Rehabilitation in Grand Rapids, Michigan, where he was initially diagnosed with mast cell disorder. In addition to working with a pain psychologist and physical therapist, he received his first wheelchair, which he now uses almost constantly outside of his apartment to help him better manage his chronic joint pain and fatigue, symptoms of EDS. 

DISMANTLING DISCRIMINATORY SYSTEMS AND RECLAIMING LIFE

Today, Devin is nearing graduation from Gallaudet with a major he designed himself: epistemology, the study of the nature, origin, and limits of human knowledge.

He explains, “I use a mixture of sociology, history, social work, and psychology to look at social phenomena like racism or ableism, those types of discriminations, to see why they exist, and then work to apply the how and why to today’s world to fix it.”

He also has worked as a leader and fellow with Keshet, an organization that aims to create spaces where all queer Jewish youth feel seen and valued, with a broader goal of advancing LGBTQ+ rights nationwide.

Devin delights in crafting creative and nourishing experiences for his friends’ and roommates’ most basic need: food. Cooking is his favorite hobby; he uses adaptive tools, including larger handles on pots and a rocking knife. The pastime offers an opportunity for exercise and movement, as he chops food and walks around the kitchen. He loves making each recipe his own—be it a Ghanese red pepper soup or a carrot string bean curry—and finds real joy in sharing his favorite creations.

Whether he’s analyzing social phenomena, empowering young people, or simply devising creative ways to nurture himself and others, Devin is motivated and inspired by another piece of wisdom from his rabbi: “Prayer itself won’t fix the issue. Prayer will give you the strength to fix it yourself.”