Living Life on a New Rhythm: Japneet Randhawa's Journey with Vasculitis
At 31, Japneet is a passionate dentist, traveler, and fiercely loyal friend living in New Haven, Connecticut. She describes herself as “happy, loud, opinionated, artistic, nerdy, stubborn, vocal, and social.” However, like others who have a chronic illness, Japneet’s life changed dramatically when she received a challenging diagnosis: granulomatosis with polyangiitis (GPA).
The Long Road to Diagnosis
Japneet’s initial symptoms began with intense earaches and gradual, bilateral hearing loss, but the road to an accurate diagnosis was six months of frustration and missteps. “I kept getting diagnosed with otitis media and mastoiditis,” she explained. “The doctors weren’t even thinking autoimmune.”
Fortunately, a sharp-eyed urgent care physician suspected an autoimmune issue, and luck intervened. Japneet’s older cousin, Dr. Vaneet Sandhu, is a rheumatologist who was able to quickly order the necessary blood tests. She was officially diagnosed in November 2022, the day before Thanksgiving. She recalled that she had read about vasculitis in medicine classes during dental school, but never really knew of it until it became her own reality.
Treatment and Side Effects
Currently, Japneet manages her condition with a rigorous treatment plan that includes Rituxan® infusions, weekly methotrexate injections, avacopan, and Botox® for related headaches. This regimen, while necessary, comes with a heavy burden of side effects including fatigue/joint pain, headaches, weight gain from years of steroids, hair loss, nausea, loss of appetite, mood swings, and hypersomnia.
The disease and its treatment have forced significant changes to Japneet’s daily life, requiring a total reset of her expectations and energy levels. “No longer can I make instant plans. I need to plan with pre and post rest days for major activity or travel,” she said. Most days, she has zero energy after work, which means no energy for exercise/hobbies on weekdays. Since she has gained weight, there’s also the guilt of not doing exercise.
Making Peace with a New Normal
The emotional and mental toll of a chronic illness diagnosis at an early age was substantial. Japneet admitted that it “took long time to make peace knowing life will never be normal and that there is no going back.” She found it especially difficult to adjust her pace of life and professional goals to the demands of her health, comparing her journey to that of her peers.
To navigate this, she relies on an amazing family-and-friends support system and therapy. She has learned to communicate her needs and set boundaries, telling loved ones exactly what kind of support she needs, and, importantly, what she doesn’t.
“A big request from my side was that I don’t want motivational speeches/quotes or the phrase ‘everything will be okay.’ It ticks me off.”
Japneet has channeled her experience into an Instagram account (@its.okay.tonotbe.okay) and fully embraces what now guides her life: “It’s okay to not be okay.”
Finding Hope and Sharing Advice
Since her diagnosis, Japneet has intentionally shifted her perspective on life. She has stopped planning too far in future. It’s more day-to-day living. She’s better with boundaries and has stopped pushing the limits mentally and physically. This mindset has helped her manage flare-ups, which require lots of bed rest, steroids, sleeping for hours, and being with friends and family. She also credits hier rescue cat, Luna, saying “her healing helped me mirror my journey.”
While Japneet has had to become less active and pause the idea of a physically demanding residency, she still embraces new hobbies, like indoor puzzles and travel, and even achieving a recent goal. “I finally did scuba diving this year since I became sick.”
Japneet looks forward to reaching a point of greater stability and draws hope from seeing “posts and stories of other vasculitis warriors who are older than me and are living their best life,” she said.
For someone newly diagnosed, she offers honest, heartfelt advice. “I would say, it’s okay to feel frustrated, to feel [life is] unfair, to be angry and sad; you don’t have to be always happy and show strength for others. Show all your emotions, not just the happy ones. You are allowed to have bad days and are allowed to rest. Do what works for you. Therapy will be a blessing and so will be being honest with people around you.”
Japneet concluded with a defiant truth for all who struggle with an invisible illness. “Strongest battles are given to the strongest warriors. We might not have asked for this role but, yet here we are!”