5 Huge Life Lessons I’ve Learned as a Lupus Warrior
Last updated: September 2022
When I was first diagnosed with lupus in 2009, I was 27, newly married, and wanted to take on everything and be the one to solve everyone’s problems. To say it was a struggle to say the word “no” is an understatement. More than a decade later, I’ve earned some stripes in navigating life with lupus and learned some life lessons along the way.
Lesson 1: You are stronger than you think
If you would have told me 10 years ago that I would not only be diagnosed with lupus but that I would have severe kidney complications, hospital visits, a rocky road to motherhood, etc., I wouldn’t have believed you. I know many lupus warriors who share this belief. You’re the strongest when you have no choice. There’s a certain resolve to endure and resilience you gain when you’re at your lowest.
Lesson 2: Say YES to rest
I’m not perfect at this; I don’t think anyone is, but I’m much better at it. I used to run myself ragged, doing who knows what, knowing I’d pay for it with several forced days of rest. Now, I know my body and my limitations and I do my best to slow down and rest for a bit. Of course, this is hard to do when you have responsibilities, children, etc., but I work to be intentional. There are only a handful of things I try to do on any given night and sometimes those get nixed if I don’t have the energy. And I’m ok with that. That’s key. Being ok to let some stuff go to be done another day. Or saying NO – even when it’s hard. That brings me to number 3…
Lesson 3: Say NO
Fresh in my lupus diagnosis if you looked at my weekly schedule you’d be dumbfounded. My husband would question why I needed to do this or that, and my simple answer is because “someone asked me to” or “they’re expecting me to be there”. Loyalty is big for me, especially in close relationships, and I had to show up, or else was I a good friend? I had to learn the hard way that I can’t be everything for everybody. The crazy thing is I put this pressure on myself and once I let it go and learned to say NO, life got a little easier.
Lesson 4: Have more compassion
There is nothing like battling a chronic illness to help you in the compassion department. As I fought my own battles, I began to understand the battles of others. Trying to picture yourself walking in someone else’s shoes is one thing, then actually walking in their shoes is another. I’m also learning to have compassion for myself and give myself grace little by little.
Lesson 5: Know your support system
In life, relationships come and go. No one knows this like someone with a chronic illness. Friendships and relationships are hard if there is not an understanding that living life with lupus can be messy and complicated. Some can handle it, some cannot. Either way, at the end of the day, there’s no greater clarity to know who is part of your support system. On the flip side, I’ve been pleasantly surprised by the friends I’ve gained over the years through the lupus community and social media groups. It reminds me of how important it is to be open to new friendships, you never how much joy it could bring to your life. And we need all the joy we can get.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?