On an oppressively hot day in July of 2010, I heard three words that would instantly change the trajectory of my life - "YOU HAVE LUPUS”. I remember sitting on the examination table, legs dangling and going numb. I was just a few short months from my wedding, the euphoria of it all hung in the balance. Everything explained by my doctor seemed garbled, which was utterly gut-wrenching. I was diagnosed with Systemic Lupus Erythematosus (SLE). She continued with terms like “autoimmune disease”, “no cure”, “chronic illness”, and “potentially fatal”. The diagnosis was bittersweet. While it substantiated almost two years of misdiagnoses, numerous sick days from work, ER visits, etc., it also brought its own trauma and uncertainty. I quickly learned I would need every ounce of help available if I was going to intentionally live with lupus. I wanted so dearly to get Back in the Game, but the game had changed. This is where Hospital for Special Surgery (HSS) entered the picture, they were a part of the game plan.
When I arrived at HSS in 2014, I was ineptly swimming and drowning at an Olympic pace. Four years after my diagnosis, many therapeutic interventions and hospital stays later, the lupus activity was still out of control. As if that wasn’t enough, my dance card was full of other lupus partners like: Discoid Lupus, Lupus Nephritis, Mitral Valve Regurgitation, Pericarditis, Vasculitis, Pleurisy Fibromyalgia, Migraines, Staph infections, Raynaud’s syndrome, Hair Loss, Myositis, etc. I heard such stellar feedback about the Barbara Volcker Center for Women and Rheumatic Disease. I felt I had nothing to lose and the world of possibility to gain. From my very first consult with Dr. Erkan to present, he’s been exhaustive, empathetic, and inquisitive. He’s encouraged my questions and appetite to learn more about all the factors affecting my health. Dr. Erkan was the first rheumatologist to inquire about my mental health, support, and ability to financially manage my care! I had limited mobility, was unable to work, juggled marriage with lupus as the third intrusive partner, and suffered with poor psychological well-being. He makes space for all of me as a person, not just as a patient. Dr. Erkan and the skilled HSS team, ranging from the world class Practitioners, Administrators like Crystal, and Social Workers (especially Jillian and Priscilla) all take a patient centric approach. They carefully lead with equity, partnering with me in shared decision making, pointing me towards a better outcome. And praise God, I am living it!
Lupus is harrowing and ever changing, but Dr. Erkan honors the objectives important to me every step of the way in my treatment. They’re able to strike a delicate balance between addressing my personal experience and what that looks like in the healthcare ecosystem. HSS has empowered me to use my agency and be an ally for other marginalized rheumatic patients. Dr. Erkan et al. tailor a multidisciplinary approach, which has significantly reduced my flares and organ damage (particularly in my kidneys). They assist in navigating diagnostic testing, approvals and authorization, financial assistance, social service programs, digital & virtual tools, and FREE lupus support programs like LupusLine®. I’m also proud to say that I’ve had the chance to participate in the Annual Walk to Cure Lupus, a huge milestone in my journey. Today I’m walking, doing yoga, riding my bike, and sharing my story, and finding my own rhythm. Having timely and attentive care has made a world of difference and help me show up as a better person, wife, and friend. I hope each individual who has been a part of my team knows how impactful and phenomenal they are.
I’m a testament to not just getting Back in the Game, but mindfully changing it. For me there really isn’t a back, there is just a press forward. In addition to having my village and my faith, Dr. Erkan and the entire HSS team have sparked resiliency, hope, and community. They’ve encouraged me to reinvent myself, making my adversity my advocacy. With their guidance, I’ve leaned into the paradigm shift of lupus, making lemonade from my lemons and inspiring others to do the same. HSS is uniquely woven into tapestry of my life, and I’m beyond blessed!
- Monique Gore-Massy
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