Lupus Makes Me Stronger
Last updated: June 2023
Can a disease make you stronger?
Rising to the challenge
I started with Fibromyalgia, added Systemic Sclerosis and then Lupus. A few more exotic conditions are thrown in there, just for fun. I've spent my entire life figuring out alternate ways to work, dress, eat, exercise, shop, socialize, and just survive. Everything is a challenge and I am usually up to the challenge. Sometimes I "shut down" for days, especially if I make the mistake of spending too much time outdoors in the sun. Sometimes I am sick to my stomach or have extra inflammation because I went off my strict diet. Sometimes I don't go off track at all and I am rewarded with brain fog or rashes or extra pain or shut down mode anyway.
How can this make me stronger?
A long time ago, I decided that this is the hand I was given, and since I only get one life, I must make it my mission to learn how to live it well. This doesn't always work - it's hard to be employed when there are days you can't lift your head. There are group and family activities when I can't fully participate. Sometimes I wear a parka and everyone else is in a t-shirt. There are meals that I can't eat. When this prompts people around me to express their dismay, I remind them to NOT pity me. Let's figure out a way that I can also participate! I just want to be there along with everyone else. I will withdraw if I need to. Some days are for gentle exercise, meditation, or sleep. Every day that I accomplish something (after setting a goal) I add it to my calendar. Once in a while I look at the calendar and see blank days but many days have an entry!
"You are strong"
I am stronger than some of the healthiest people I know. Everything I can do is an accomplishment, not a given. I rarely speak about my conditions or limitations outside of a handful of close confidants. I spent decades finding the right doctors. I get frustrated when I can't remember names or certain words. I keep AI devices close by to look up what I can't remember. And I remind myself, you are strong and life is good.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?