Entrepreneurship and Chronic Illness

I usually try to keep things positive when sharing on social media. But sometimes being a business owner is not always picture-perfect — especially when you’re managing a chronic illness. I was diagnosed with Lupus (Systemic Lupus Erythematosus, or SLE) when I was 9 years old. Life with a chronic illness can be unpredictable. I’ve been fortunate enough that my SLE symptoms have been mild compared to most people, and I have never had any organ involvement. But it is always a very real concern that can sneak up unexpectedly at any moment.

For the past few years, I’ve been fortunate to have more good days than bad ones. But the bad ones still happen, and I’m usually able to push through them when needed. But I’m very aware that this is not always possible, and I have no shame in admitting when I can’t. My business partners are really more like sisters whom I can call, and they are always ready to step up and step in when I need them, as I hope they feel the same way about me.

Having been diagnosed at such a young age, I’m no stranger to doctor’s offices, appointments with specialists, and medical tests. The things that affect me most are the sun and stress — even GOOD stress! I’ve often been bedridden for days after attending an exciting event or planning a fun outing. In the summer, you’ll often see me covered head-to-toe in sun-protective clothing (no tans here!), a large hat, and sunglasses. And when I don’t feel well, I’m usually completely fatigued and just need to lie down and rest, or I’m experiencing joint or body pain and just need to slow down and take it easy.

Me (in the Bambi t-shirt) at my 10th birthday party. This was about a month after my diagnosis. I still had the tell-tale butterfly rash on my face - it's one of the most obvious indicators or Lupus.

When Marlo, Brenda, and I began talking about beginning a business together, we had a serious conversation about my health and the effects that stepping into entrepreneurship could have on me. I could never make any guarantees, as life is so unpredictable, as is Lupus, but I promised to always be honest with them on how I am doing health-wise. And so far, we’ve been going strong with few tap-outs. And then, yesterday happened…

I stopped in at CVS on my way home from dropping my son off at school to grab some peanut butter. This is the only store I pass on the way home, other than the gas station. After being in the store for a few minutes, I experienced a sudden change to my vision. Everything went blurry! My vision was blurry all the way home. When I got home, my computer screen looked blurry too.

I called my doctor and she had me come in right away. She checked my blood pressure, did an A1C test to check my blood sugar, checked my eyes, and did a neurological exam. Everything looked normal. She called my ophthalmologist and they had a quick conversation. He recommended going to see him the following day. I left my doctor’s office and headed home, feeling better, my vision having improved a bit, but still a little fuzzy.

I finished my workday, had a virtual call with my business partners (making sure to tell them about my weird vision issues that morning), and was doing laundry before running out to get my son from school when, at 5pm, my doc called me from her car on her way home from the hospital. She said that my symptoms were bugging her. She called a neurologist colleague to discuss it and the neurologist said that it was possible that I had a small stroke — small enough that it only affected the eyes and then recovered quickly. My doc told me that Lupus puts me at higher risk of stroke. Just to rule things out, she recommended that I go to the ER. If she ordered imaging for me, it would be weeks before I got an appointment, but if I went to the ER, I would get the imaging tonight and if it WAS a stroke, then we could take the necessary steps to prevent another one.

I drove to the high school to pick my youngest up from school. I cooked dinner for the family. I took a shower and dressed in comfy, metal-free clothing. I removed all my jewelry. Then my hubby and I headed to the hospital around 7pm. I texted Marlo and Brenda on my way just to give them a heads-up — my support network always ready!

The emergency room was fairly quiet and the wait wasn’t long. They did some bloodwork, checked my eyes for scratches to my cornea, did a vision test, and sent me for a CT scan of my head. We left the hospital around 12:30am with a clean bill of health. No signs of stroke, no tumors, no aneurysm. The verdict? “You’re 45 and probably just need glasses.” {insert eye-roll here}

I already had an appointment scheduled with my ophthalmologist for tomorrow to complete my visual field exam so he will just extend my appointment and do a full dilation exam. I just saw him a month ago and there were no issues. I get annual eye exams to make sure my eyes are healthy since the medication I take for SLE, Plaquenil, can cause eye toxicity and all sorts of damage to the eyes that is irreversible. I’ve been on Plaquenil on and off for most of my life and will be on it for the rest of my life.

I awoke this morning feeling relief that I went ahead and got all my testing done at the hospital last night. I have a spouse, children, and business partners all counting on me and my health. I would be doing them all a disservice if I did not do all I could to make sure I am fit to keep working hard. Some days, the illness wins, and it’s time to rest and take a break. That’s ok too. But it’s really important to recognize those moments and slow down when needed.

I am fortunate that this experience seemed to just be a fluke — a curiosity left to my weird immune system, perhaps. But I am very aware that it easily could have been something much worse, much scarier. For now, I have a story I can tell as I joke about the intriguing conversations I had with all the doctors and nurses I met last night over the 5 hours we sat in the ER. And if you happen to see me wearing glasses in the near future (a big possibility), you now know the story behind those glasses and how a stop to buy peanut butter nearly blinded me! (Hahaha!)

So, to my fellow chronic warrior creatives and entrepreneurs, how do you balance your health and your hustle?