I waited a few weeks before I told my friends. I wanted to try and make sense of things first, and part of me felt embarrassed. I don’t really recall making a big deal of it and calling my friends just to let them know. I just brought it up casually when I had spoke to them, and usually it only came up when I wasn’t feeling well and had to explain myself.
I remember defending myself to a girlfriend about why I couldn’t go out to the club one night. She didn’t understand why I could no longer stay up til 3 in the morning dancing. Prior to lupus, I could go out all night, drive home late, or even crash at a friend’s place without thinking twice. As much as I tried to explain the fatigue and body pain, she felt like I was making excuses. She accused me of ditching my friends because I had a boyfriend now.
I wasn’t able to go out as much, even though I wanted to hang out with my friends. After declining several invitations, friends stopped inviting me out. It crushed me that no one understood and was willing to just come meet me and hang out locally. I felt very isolated at that time, and felt the only person I had to talk to and hang out with was my boyfriend. It was a really lonely time.
There were times that I wanted to ask for help, but my pride wouldn’t let me. I didn’t want to inconvenience anyone. Sometimes, I just wished they would call me, ask how I was doing, ask if there was anything I needed. It felt like no one cared.
Maybe it was my own fault. I never really told anyone just how bad it was. I never really shared how I was feeling, or that I needed their support. I hid my pain, and my fears and anxiety. I pretended everything was okay, so how could I expect anyone to know what was going on inside of me?
I did gradually start telling more of my friends, and I started to get comfortable sharing what I was experiencing. But this led to another set of issues. I know my friends always felt uncomfortable, unsure of what to say. They were always offering impractical advice, telling me to just stay positive, or telling me how a friend of a friend of a friend has lupus and she’s doing just fine. Or they would say they would pray for me, or they were there for me, but that would be it. No follow up, no checking in.
Dealing with my friends was one of the hardest parts of being with diagnosed with lupus, and it made me realize I need to work on my communication more. I am still learning how to express myself clearly and be direct about asking for what I need and want.