Living with an Autoimmune Disorder
I show up late to the party.
I always was an on time person, but that was before all of this.
I hate being late to anything but my body doesn’t want to follow my plans.
I walk in and am surrounded by old friends I haven’t seen in a while.
Sadness washes over me as I realize just how much I’ve missed out on. They’ve been living their life as normal, experiencing fun vacations and events together while I have been left out through no fault of their own.
Again and again, someone who hasn't seen me in a long time tells me how good I look. That my my hair looks great, my body looks thinner than before, my skin seems to be aging backwards, and my outfit is on point.
They say how much they’ve missed me and how I must be doing really well since they follow me on Instagram and it looks like I’ve found success.
The truth is, I have never felt so invisible.
My hair is falling out due to my illness so I wear hair extensions to cover the spots of where my hair used to be.
I am skinnier than I’ve ever been because my body is not absorbing any of the nutrients I eat.
My skin looks great because I had 35 botox shots in my head because of my unbearable migraines.
But okay, you’re right, my outfit is pretty amazing so I’ll take that compliment. (Thanks Ooh La Luxe!)
When you have an autoimmune disorder, most people do not understand how sick you are because you look fine. Your body just feels like it is on fire from the inside as it slowly shuts down.
All of this started when I was five years old.
I was diagnosed with Type 1 Diabetes. I already felt like the weird kid at school so I learned how to hide it really well. I didn’t want adults or other kids to treat me differently because I was sick. I just wanted to be normal.
I perfected this skill until I got so sick that I had to ask for help. This was the hardest thing for me to do but I’m so grateful I’ve learned how to do this more often.
Fast forward a few years and I’m still struggling with this illness.
In the last three years, I have lived a very strange life.
I can barely get out of bed most days. My bones feel like are made out of lead because they feel so heavy. I’m dizzy when I stand up and am frequently out of breath.
Every day at 3:00 pm, I get an overwhelming headache and have to use an ice pack on my head. The worst side effect is the brain fog that comes with the pain. It reduces my ability to keep all of my business tasks and responsibilities straight.
For the longest time, doctors told me the symptoms were coming from my period. Then they thought it might be depression but it was later ruled out. At one point, they thought I wasn’t drinking enough water.
After being told to go on disability (which wasn’t possible since I didn’t have a clear diagnosis at the time and didn’t want to give up my business), I knew I had to rearrange my life and come up with a different idea on how to make money.
I needed to rethink my business.
I loved shooting weddings, capturing the love of thousands of clients from behind my camera. Wedding photography was my passion for over a decade, but I knew that with my illness, I wouldn’t be able to work in the same capacity.
I began searching for other ways that I could turn my gift of photography and social media marketing into another business.
After doing some soul searching and market research, I decided to start Get Found Stock, a stock photo membership community that offers editorial calendars, social media education, and community resources to help people create better content their audience will love while saving them time and money.
This new business model allows me to generate recurring monthly revenue so my life has more stability and security. I also built a team (my girl squad) that can step in when my illness flares up.
As I continued to work on Get Found Stock, the doctors finally determined I had an autoimmune disorder.
I was diagnosed with Mixed Connective Tissue Disease, which is a combination of a few autoimmune disorders. The diseases that are most prominent within me are Lupus, Rheumatoid Arthritis, and Polymyositis.
I have arthritis in my feet, spine, and hips. My bone marrow is inflamed, and my tendons and ligaments are so tight that I can’t even straighten my legs (although I do all of my physical training exercises and keep trying to strengthen them).
Of course, I don’t say this for pity or even for sympathy. I’m thankful for the encouragement I’ve received on Instagram and through all of you who read my blog, but I share this story with a bigger purpose.
I know that the universe gave me this gift for a reason.
Some days, it is hard to see this illness as a gift, but I can see all the good that has come from it. If I didn’t experience this hard reset, I wouldn't have had the time to plan another business and take full inventory of my life.
I learned what was working in my life and what wasn’t.
I learned how to take better care of myself, which has helped me be a better entrepreneur and mom.
I learned that all we have is today, and today is a gift if we let it be one.
I may not be able to walk into parties with the same glow as I did before. I may have to relearn how to grow a business that can run without me when I need take a step back for my health.
But it’s a season of new beginnings.
There may be pain along the way, but I have an awesome team of cheerleaders by my side (like my son, my business team, my friends, my community) who will stop at nothing to make sure I keep going.
I’m filled with more gratitude and hope than ever before, and I can’t wait to impact lives through Get Found Stock and by sharing my story (this unfiltered one).
Do you live with a chronic illness or an autoimmune disorder? How has it affected the way you work as an entrepreneur? I’d love to hear your story in the comments below.