What It’s Like to Have an ‘Invisible’ Autoimmune Disease

Loved ones often don’t understand how debilitating diseases such as psoriatic arthritis can be.

Jody Quinn, at the age of 58, has been living with psoriatic arthritis for the past 13 years. Her journey with this autoimmune disease began subtly, with initial symptoms manifesting as pain in her wrist and elbow. In the early stages, it was challenging for her friends to grasp the full extent of what she was going through. However, Jody’s resilience and determination to become her own advocate not only helped her navigate the complexities of her condition but also played a crucial role in educating those close to her about the often-painful realities of psoriatic arthritis.

Reflecting on her diagnosis, Jody recalls that the journey to pinpointing the disease was long and arduous. The initial pain confined to her wrist and elbows led doctors to suspect repetitive stress injuries as the culprit. Consequently, they recommended various modifications to her daily routine, including the use of an ergonomic keyboard.

It wasn’t until 2003 that Jody received an official diagnosis of psoriatic arthritis, but in hindsight, she believes she may have been living with the condition for a decade before that pivotal moment. The diagnosis marked the beginning of her quest to raise awareness and understanding of this relatively lesser-known autoimmune disorder.

One of the significant challenges Jody encountered post-diagnosis was the lack of familiarity that many people had with psoriatic arthritis. Unlike more visible conditions, such as cancer, the hidden nature of this disease often led others to underestimate its seriousness. This lack of awareness sometimes resulted in well-intentioned but misguided advice, with suggestions ranging from weight loss to dietary changes or lifestyle modifications. Jody notes that people rarely offer similar advice to those dealing with cancer, illustrating the need for increased awareness about the complexities of psoriatic arthritis.

Despite these challenges, Jody’s resilience shines through. She acknowledges the importance of pacing herself, a lesson learned the hard way. Even when she feels up to the task, she consciously limits her activities. She understands that an overburdened schedule can have repercussions, potentially rendering her bedridden for a day. Interestingly, Jody finds that it’s often more challenging for her long-time friends to accept these changes, as they remember the active person she once was.

Moreover, Jody has been quietly concealing some of the pain that psoriatic arthritis inflicts upon her. For the past 13 years, nobody has glimpsed her natural fingernails because she diligently keeps them polished. This practice camouflages the telltale signs of psoriatic arthritis, such as splitting, pitting, and lifting of the nails from the nail bed—a common symptom among psoriatic arthritis patients. Lately, the disease has extended its reach to her fingers, causing swelling in the joints of her right pointer finger and her left hand, along with frequent bruising of her baby fingers.

Over the years, increased awareness of psoriatic arthritis has helped Jody immensely. In 2011, professional golfer Phil Mickelson publicly disclosed his own diagnosis of psoriatic arthritis. This revelation sparked a chain reaction, with celebrities like Kim Kardashian and Cyndi Lauper sharing their experiences with psoriasis, a skin condition that affects up to 30% of individuals who later develop psoriatic arthritis. The heightened media attention significantly contributed to her friends and family gaining a better understanding of her daily struggle with a real and impactful disease.

Another essential pillar of support in Jody’s journey has been her understanding employer. She serves as an office manager at a small, family-owned construction company. They have stood by her side since her initial diagnosis and have been unwavering in their support whenever she needs to take days off for treatment. Recognizing the importance of adequate rest for individuals with psoriatic arthritis, Jody has even adjusted her work schedule, reserving Mondays as a day for preparation and recuperation, ensuring she starts each week with her health in mind.

Despite the challenges she faces, Jody remains committed to maintaining an active lifestyle to the best of her ability. She adapts her activities, choosing the elevator over the stairs when necessary. While she has had to accept certain limitations, such as the inability to engage in intense workouts or embark on extensive vacations, she continues to prioritize staying as active as her condition allows.

However, Jody’s determination extends beyond her personal journey. She recognized a significant gap in awareness surrounding psoriatic arthritis and decided to take action. In her quest to educate others about this condition, she volunteered as a community ambassador for the National Psoriasis Foundation—a non-profit organization dedicated to assisting individuals with psoriasis and psoriatic arthritis. In this role, Jody collaborates with healthcare professionals, legislators, media outlets, and the general public to raise awareness about the challenges faced by those living with the disease.

Furthermore, Jody has spearheaded a team known as “Jody’s Psore Joint Journey.” This team participates annually in a 5K race organized by the National Psoriasis Foundation in Boston. This event not only serves as a platform to raise funds but also as a powerful symbol of solidarity and support for individuals affected by psoriatic diseases.

Jody Quinn’s journey with psoriatic arthritis serves as a testament to the resilience of the human spirit. Her commitment to educating others, her ability to adapt to the challenges posed by her condition, and her unwavering advocacy efforts have not only empowered her but also shed light on the often-underrecognized world of psoriatic arthritis. Through her story, she reminds us all of the importance of compassion, understanding, and the pursuit of knowledge when it comes to individuals living with chronic autoimmune diseases like psoriatic arthritis.