Background/Purpose: “What’s wrong with me mom? Why am I always slow and hurting? Why can’t I play without being in pain like the other kids?” These were common questions asked by me as a child. Living with a rheumatic condition is difficult, but can be even more emotionally taxing when experienced during a time in which one is supposed to be carefree, growing, gaining a sense of independence, and exploring the world around them and how they fit in the complexities of life.

Imagine you’re a child, in a new and unfamiliar environment. You are more quiet and reserved and allow the grown-ups to talk about big words that you assume deal with you. Then you leave and go back into the world, unsure exactly why you feel or look the way you do, how to cope, how to live in this new life. You just take the bitter tasting pile of pills you are given by your parents and try to get by. You go to school, not knowing how to address the stares and questions. This was my reality. I was seen by countless physicians and received a myriad of tests before ultimately being diagnosed with Mixed Connective Tissue Disease, whose major components are Arthritis, Scleroderma, Dermatomyositis, and eventually Lupus which necessitated 2 kidney transplants. In addition, I had autoimmune hepatitis. My mom seemed both saddened and relieved at the diagnosis. She told me things will get better as this monster now had a name. A name means we can fight it. 

I did not know what was going on, why I felt or looked the way I did, how to cope, or how to live in this new life. Children are much more aware than you think. Though my mom tried to smile through it and stay strong, and doctors would at times whisper inaudible words during visits, I knew there were deeper truths behind their grins and whispers. Helping children understand and cope with their life changing diagnosis is something that should not be taken for granted. We should meet them where they are and provide tools for them to navigate this new world with resilience and confidence. Give age appropriate resources to help them understand how to address the questions and the stares.

Throughout my life I have had amazing physicians, and quite the opposite. In the world of adult rheumatology, what I appreciate most from my physicians is support. Patients trust and take what you say to heart more than you may think. You are the expert in their condition, and what you say has weight. I have had physicians instill resilience in me while others tried to dissuade me due to my disorder. The doctors that have stood behind me are the reason I made it this far in medicine, not in spite of, but WITH my condition: lending to my recent acceptance into a pediatric rheumatology fellowship.

Intervention: As above

Maintenance: As above

Quality of Life: As above

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/whispers-of-resilience-navigating-life-with-rheumatism/