Telling friends and family about your diagnosis can be extremely intimidating, overwhelming, and nerve-racking. It can be hard to share something so personal and complicated, even with the people closest to you. These are conversations that should take place when you are ready and truly want to have them. You should share as much or as little as you want, when you want. Over the years, I have learned what is most helpful for me to share in order to get the support I need and help my loved ones better understand my condition.
When explaining lupus, I try to be specific about what it means for me on a day-to-day basis. People will do their own research and see keywords and phrases that may not mean anything to them if they have no way to contextualize it. I like to focus on how my symptoms affect my life -- how much I need to sleep each day, why I need to work remotely, what I do when I get a migraine, etc. I like to be as descriptive and honest as possible.
I also like to talk about how my disease might impact my relationship with the person I’m talking to. I may tell them that it’s common for me to have to cancel plans at the last minute or that even though I may “look good,” that doesn’t mean I feel good. It helps me to set expectations ahead of time. I also tell people that I am always happy to answer questions about my illness. Because lupus is such a big part of me, I want people to understand it as much as possible.
“How can I help? Do you need anything?” are two common questions that you get from friends and family. These can be hard to answer when oftentimes, there isn’t much someone can do to help you feel better physically. I’ve learned that when telling loved ones about lupus, I tell them what things are actually helpful to me and make me feel supported.
Granted, it’s taken me years to figure these out myself, but once I identified them, I found it really helped to communicate them early on in those conversations. Whether it’s needing help with grocery shopping, frequent phone calls, or even just wanting space when you aren’t feeling well, being transparent allows everyone to stay on the same page. It also helps you get the support you actually want and need!
These kinds of conversations have absolutely evolved and changed from when I first got diagnosed 13 years ago. Right after my diagnosis, I was open about having lupus but wasn’t totally honest about how difficult it was for me. I felt like I had to be positive whenever I told people about it so I wouldn’t make them uncomfortable. After realizing that I deserved to be honest with them, I deserved to advocate for myself, my relationships improved. I felt more seen, and I felt more understood.
Not everyone will respond well to your diagnosis or what it means for your relationship with them, and that is a reflection of them, not you. You will find people that support you, love you, and will help navigate these conversations with you, no matter how difficult they may be.
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