Updated: Jun 7
Whatever your struggles, there is hope in shifting your expectations and self-talk.
No two cases of Lupus are alike.
I have Systemic Lupus Erythematosus (SLE), an autoimmune disease that causes my body to attack my own tissues and organs. And it sucks.
For me, Lupus is always changing. I have days where every joint and muscle in my body feels inflamed, and the pain is debilitating. I have days where my legs simply give out from under me, causing me to fall seemingly out of nowhere. Sometimes people laugh at me, not knowing what I’m dealing with on the inside.
I also have days where the inflammation in my brain causes an acute brain fog––I can’t think
straight, remember important tasks, or even come up with the right words for things. This is the most frustrating symptom of all.
Despite the everyday setbacks that Lupus has brought, I refuse to be a victim. I refuse to let the disease control me or define the parameters of my life. I have built not just a life, but a beautiful success story despite my struggle.
In the last year, I have been a mom to my beautiful daughter, given birth to perfect twin babies, made it through a global pandemic, and built a business from the ground up. Through it all, Lupus was in the background, but not the driver's seat.
That’s not to say that my business isn’t sometimes impacted by my disease. When I had only had my doors opened for a single month, I had a terrible flare up that meant I had to reschedule every single client for the day. It felt like the biggest setback.
But here I am, almost a year later, crushing every goal I have set for myself and building up the kind of company I have always dreamed of having.
To me, Lupus has meant showing up. It means pushing through pain and frustration to get to where I want to go. Many people don’t even know I have Lupus, because I refuse to let it control my life.
To others hoping to go into business or do other hard things with a chronic disease, I would say this: be honest, be vulnerable, give yourself grace. You can do this. I don’t have all the answers, but there are three things that have helped me get through the first year of owning a business, which can be difficult even under the best of circumstances. Those three things are honesty, acceptance, and perspective.
I am very open with my employees and partners about what my disease means on a practical level for the business. Sometimes we shift our schedule to accommodate my physical and mental needs.
When I’m not at my best, I let those around me know. I can say, “Can we revisit this issue tomorrow, or another day when my brain is equipped to deal with it?” When I don’t have the energy to take care of problems, I have a great support system to lift me up. Surrounding yourself with good people who know your situation and care about you is a must.
I have had to accept that things will never be perfect. There are imperfect times and imperfect people. This will lead to an imperfect business. Honor that and accept that.
Surrendering to my disease was also a turning point for me. While there are things that I can do to reduce my flare ups, such as eating clean foods and managing my stress, I don’t control Lupus. The pain and confusion still comes eventually. I know this, and my team knows this, and when it happens, we accept that, manage it and move on.
I wish everyone would think about the way they talk to themselves more often. I find myself saying things like, “why is my brain making me so dumb?!” when I’m having an off day. Logically I know this isn’t true, but it can be difficult to remember when my brain is inflamed and I can’t recall simple details.
My children are listening to me, and I don’t ever want them to copy this tone as they speak to themselves. Over time, I’ve learned to use different words. I now say, “Mommy is scatterbrained today,” or “Mommy’s brain is a little tired right now, but it will get better.” The shift in perspective helps me remember that flare ups always pass. I may be having a bad day, but I have a wonderful life.
The month of May is Lupus Awareness Month. I share my story not to complain or to brag about my accomplishments, but to put a little bit of goodness out into the world and show others what is possible when you have the passion, the vision and a positive mindset! You can truly do anything!
Whether your burden is chronic pain, imposter syndrome, grief, mental health issues, or something else totally unseen––honesty, acceptance and perspective are amazing tools to help all of us deal with the ups and downs of life, so that we can truly thrive. Living Authentic will set you free!