Joanna S. - Diagnosed at age 24

I was newly married, and finally, after more than two years of working with doctors – I had my diagnosis. I have RA and lupus. I remember being terrified; I didn’t know what that meant – was my life over before it started (I wasn’t even 25 yet)?

Today, at nearly 40 years of age, I can look back and see the wealth of knowledge I have gained through my journey. Pain is constant; fatigue can be devastating, and more and more, I am finding super swollen joints, making life harder and harder. I hate that most days, the first thought I have is – how much will I hurt today? How tired am I going to be today?

However, resilience helps me get through each day. I know I have a choice—I can do nothing or fight. And I chose to fight. I have learned to stay organized – planning is a huge lifesaver. I also schedule myself for more things in the afternoon than morning – I tend to drag in the morning. Naps are a lifesaver – I set a timer for 20-25 minutes or 1 hour and 45 minutes. The nap refreshes my mind enough to wake up and go again. Balancing what I do daily also helps me–I list “what Joanna needs to accomplish today.” Some days, it is as simple as “doing laundry.” Some days, I get energetic, and I aim to clean the shower or tub.

Life has taught me the one thing – it's okay not to do it all! Yes, when I was younger and not as advanced in my lupus, I could go and go. Now I can’t do that. Initially, I could do a whole day of chores without exhaustion. Today, I can’t do that. Today, I went to the grocery store, came home, and napped for nearly two hours to recover, which is okay. Each of us might be different, but the goal is the same – figure out what works for you to have the life you want.

Since my diagnosis, life has not ended. Instead, I have earned a doctorate, traveled the world, and am so grateful I can still work. Each day is hard, and this journey is not easy, but together, we can make a change for our lupus community.