Sharing My Lupus Diagnosis
Last updated: January 2023
When I first got my lupus diagnosis, I was very hesitant about who I would share the news with. I feared the judgment or the sympathy people would feel for me. I wondered: Would people treat me differently or would they go on about their day like nothing happened? Would they label me as the "sick" girl? Would they even care? It was also a hard subject to broach. How would I even start a conversation? Like, hey, everyone guess what? I have lupus. Should I have done a diagnosis reveal just like those pregnancy photos but with my CT or MRI scans?
So many things raced through my mind about how I would tell people. I also was a bag of emotions when I got diagnosed. I was still in denial and hoped if I didn't speak of it, it would eventually go away. I was also angry, ashamed, and embarrassed because I felt my body rejected me and I was damaged goods.
Sharing my lupus diagnosis with close family
Only my parents and my then-boyfriend, now-husband, knew of my situation since they were with me throughout when my symptoms started appearing. They eased my mind and told me everything was going to be alright. They loved me unconditionally. When the time was right, I could share the news and could choose who I wanted to know. It was such a struggle. I really didn’t want to tell anyone, but the swelling, the fatigue, and the masks made it very obvious that something was going on.
I first told my boyfriend’s family and closest cousins. A lot of them were in disbelief and had so many questions. No one in our family had lupus, so we were all learning together. They were all so very understanding and open. If I ever needed anything, they were my go-to group of people. Some of them would get my medications or bring me to doctor appointments or even bring me food to eat if I was stuck at home.
Sharing my lupus diagnosis with coworkers
The next batch of people I shared the news with were my coworkers. I was taking lots of days off. I had multiple doctor's appointments, so I knew they were curious. Some days, I spent more time in the office than at home. So my coworkers felt like a second family. When I told them the news, they all embraced me and showed so much compassion and empathy. I was glad to have found a good support system at work.
Sharing my lupus diagnosis with others
Eventually, I got the courage to tell more family members and friends. I learned who was really there for me when I needed them and who accepted me for me. It painted a clear picture of who made an effort to understand what lupus was about and how it affected me. I saw who was there for me and understood when I was too tired to go out or to stay away from me when they were sick. It showed me who cared about me and who wasn’t dismissive of my feelings. I lost some people in my circle of friends, but that’s a part of life, and I was ok with that.
Letting go of fear
It took a while to learn to let go of what people thought or how they reacted to my news. I only wanted positive energy in my circle and people who could help me on my journey. Eventually, I began sharing my story on social media so even strangers could read my story. My lupus diagnosis was going to be a part of my life forever. I wasn't afraid anymore of what people thought. I accepted my diagnosis and was proud of how far I had come. I wanted to shout it out to the world and by sharing my story, I hope it gives courage to other people out there like me. Our diagnosis is not something that we should hide. But it should be something that we should embrace and share with the world.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?