There are few things that a person living with lupus can control. The how and when we share our healthcare journey with others is one that we as people living with lupus do have control over. Each person living with lupus is unique and after 36 years as a lupus patient, I believe that some lupus patients (like me) will feel more comfortable sharing our healthcare journey than others. But living with lupus means that there will be times when patients will have to discuss our health issues with others not on our healthcare team.
Depending on the age you are when you get diagnosed you may have to tell teachers, employers, even new friends and lovers. As for me, I was 15 years old when my diagnosis was confirmed. After I had a definitive lupus diagnosis and had gained a basic understanding of lupus, flares and how to manage my life on steroids, I slowly began sharing what lupus was and what it was doing to me with friends and teachers. The steroids caused weight gain and bloating, the flares caused me to become a social pariah as some feared the autoimmune disease I had.
In college, where everyone and everything is new, I had to determine how and when to disclose the “fun fact” about me was that I had systemic lupus. I immediately told my roommate and Resident Assistant; as for the rest of the girls on my dorm floor – that took more time as we established trust. Before the semester got overwhelming, (usually the first two weeks of class) I would take advantage of the professor’s office hours. Taking the time to introduce myself, share my diagnosis and how I hoped that lupus would not impact my work or attendance and I looked forward to a great semester. Those steps helped with some at the university but others saw nothing as lupus is an “invisible illness.
Dating proved to more challenging. Looking for love is made even harder for lupus patients than most people because we need to consider “how and when to tell someone you are dating that you have lupus?” Is there a right time? Is there a right way? If there is, I didn’t know it. What I do know is that as Martin Luther King, Jr. once said “The time is always right to do what is right.” I have found that disclosing my condition sooner is better but too soon can be scary. Each time a lupus patient discloses their condition to someone they are taking a risk. That is true, even after living with lupus for 36 years, the truth is scary and there are some people who will choose to avoid developing feelings for someone simply because they have lupus.
Many refer to lupus patients as butterflies. I like the Indian poet Rabindranath Tagore’s statement “The butterfly counts not months, but moments and has time enough.” That quote reassures me that each patient will find a way to convey and tell others about their lupus journey when they need to. The challenge can be daunting. I believe that each person living with lupus will find their way and eventually become comfortable as they share their story.