“You may feel that you’re missing out on life.” And if she hasn’t told them already, that’s when her disclosure about her own journey with lupus comes into the conversation. Following that, she shares resources with families and notes that unlike her own time as a childhood lupus patient, now support groups, advocacy groups and online communities abound.
In addition, she notes, “I always try to caution my younger patients, especially the newly diagnosed patients, to think of themselves as a person. I ask them to describe themselves without using the word lupus, to describe their character, their personality. I tell them to be proud of those core aspects of themselves that won’t be touched by the illness. The important thing about building resilience is to allow them to grow and appreciate themselves as apart from the disease.”
Education Mission
Dr. Ugochukwu feels fulfilled when offering resources and advice to patients and families. She also wants to make a difference through helping her colleagues to understand their patients. She’s currently working on a guide for her fellow residents. It includes things to consider with young lupus patients who are hospitalized.
She notes that colleagues often come to her for advice. What she communicates is that physicians need to take into consideration the social aspects of the patient’s situation. “We know the treatments, but you lose so much of your dignity and humanity in the hospital: you don’t get to dictate your schedule, you don’t even get to wear your own clothes, tests are performed on you, etc. When providers don’t acknowledge how dehumanizing the hospital can be, that can really affect you.”
Dr. Elder acknowledges that although her group makes a concerted effort to keep the care personal, and to include social work and other attendant providers, “it can be hard in the hospital because everyone is overworked. [Adaobi] was in and out of the hospital a lot. It’s kind of surprising that she ended up going into [this specialty]. I think she wanted to make a difference for the next generation.”
With all her outreach to families and colleagues, Dr. Ugochukwu has created meaning from her experience, which she characterizes in this way: “When I share with patients and families that I have lupus, their faces light up. You feel as though everything that you’ve gone through, everything that you’ve endured, has had a meaning, has had a purpose.”
