Sharing the Journey: End of Year Reflection – Lupus Lessons

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What is the most important lesson you have learned from lupus this year? 

This year, I learned that living with lupus is a constantly fluctuating journey. I ended up switching jobs in the middle of the year and went from having my disease nicely under control to being in constant pain and experiencing weekly flares. I had to remind myself that new demands on my body and a different schedule can really throw off my disease. I had to learn to develop new coping strategies to deal with these new requirements at work. It was a tough process and required a lot of trial and error, but it reminded me of all the coping tools I have in my lupus toolbox to keep me healthy and functional (napping, steroids, self-care time, etc.). It's all about learning how and when to use your lupus control tools to keep yourself healthy, productive, and thriving. – Becca 

The most important lesson I’ve learned this year from lupus is to not panic when you get one set of “bad labs.” Take a deep breath and remember that lupus has its ups and downs. Be patient with yourself, your body, and know that one piece of bad news does not determine the outcome of your entire life, and sometimes when you repeat the lab work a few months later, it may be better than before! – Roxi 

This year, and last, I learned that while working from home I have to force myself to move. I have found myself stiff and sore, because I don’t have to move around as much as I would in the office. The lesson for this year is that stretching, yoga, and monthly massages are exactly what my body needs. Learn what your body needs right now and know that it can change at any time. – Kayla 

The most important lesson I have learned from lupus this year is to never underestimate lupus and its effect on everything. I have always known that lupus can attack any organ, but this year I have watched it happen and that makes a difference when you actually see for yourself. I am sitting in the hospital right now for lupus’ effect on my intestines. How uncommon and unheard of is that?! This is why we need a cure! Lupus is a vicious disease that cannot be underestimated. It can affect anything. Keep advocating until our cure comes! – Angel 

I have learned that my health comes first. I am a school teacher and my school has experienced multiple quarantines. This has been detrimental to my health, and I am so worried about COVID-19 and how it will affect me. I have learned that a job is not as important as my health and my life. – Kyra 

The most important lesson I've learned from lupus this year would be to take advantage of each day because you never know how you'll feel the following day. And that it's ok to rest and do nothing if my body tells me to. – Jaime 

We understand how challenging lupus can be in your everyday life and how it affects everyone differently. It’s important to know you’re not alone in your journey. Some have found it useful to develop coping strategies to handle the new realities of life, like taking advocacy into their own hands. Even getting in touch with your support system can make a difference in your journey. The National Resource Center on Lupus offers a worksheet that can help you determine what you need. And while many of us wind-down at this time of the year, it’s important to stay active as moving can alleviate the pain or stiffness you may feel. Don't be discouraged if this year has not been what you expected, and your body has not handled it well. Remember, you are a Lupus Warrior and resilience is your superpower.