Today I am very excited to share our interview with Mitzi Williams.
I first met Mitzi online in a Facebook Support Group.
I love online support groups, I am in several myself. I love them so much I even started a support group for lupus and Sjögren's patients. I hope to help educate, empower and inspire individuals living with rheumatic diseases to Rise Up! and continue moving towards remission and a healthier lifestyle.
Let's get into the interview so you can meet and learn about Mitzi a fellow lupus patient.
Hi Mitzi, Can you introduce yourself? Let our readers know a bit about yourself and your life. My name is Mitzi Williams.
In the lupus community, I have been referred to as The Lupus Princess Warrior; and I wear that title proudly.
I just turned 19 in May 2021. I reside in Texas, USA. I currently live with both of my parents, my sister, and my boyfriend; and we can’t forget our pit bull named Pudding!
In early August my boyfriend and I will be moving to our apartment in Waco, TX as I am full time at Baylor University. I work full time as well. My hobbies include shopping, spa days, and anything self care. I really, really love spending time with my boyfriend. He’s been my best friend since we were 13.
When did you first get sick? I started having actual joint pains and trouble moving around in August 2020. That was my very first semester of college (at Baylor). My family does have a history of autoimmune diseases. My mom has rheumatoid arthritis. Coincidentally, my aunt Mitzy (the person I was named after) died of lupus just 10 minutes before I was born. Knowing this, I was absolutely scared out of my mind when I started having pain. So I hid it and told myself it was nothing. However, the pain became unbearable. I was tested on December 1, 2020 and diagnosed the next day. How long did it take to get a diagnosis and at what age were you diagnosed with Lupus? It did not take long at all for me to get a diagnosis. My wonderful mother has always taught me to know my body.
Any ache, pain, symptom, side effect, you name it.
So we went to my primary care together and told him exactly what was going on. We knew it was either rheumatoid arthritis or lupus, so we had him test for both.
I was 18 and on top of the world at the time. I bought myself a convertible, just graduated high school, was attending Baylor University which I had been awarded over $150,000 in scholarships for.
Hearing this devastating news about my diagnosis knowing that it already left such a tragic mark on my family was mortifying.
It completely shook up my world. How long have you been living with lupus now? What is day to day living like now? It has been almost 6 months to the day since my diagnosis.
“Living” was, at times, a bit of a stretch.
The weeks following my diagnosis I was devastated. I was just going through the motions of life. I had previously been on top of the world and was knocked down by a simple phone call - the diagnosis.
I felt my life had ended as it was barely beginning.
It’s something that you would see in a movie, but this was my life. The feeling is indescribable. That’s the truth of it all.
My goal is to share the good, the bad, and the ugly.
That’s what spreading awareness is all about. Lupus is so much more than a photo op. This has altered my life forever. Some days I wake up and I can’t move. It’s like some kind of paralyzation nightmare that I can’t wake up from.
The medication never ends. Morning, night, and everything in between. Sometimes I’m covered in braces which can sometimes feel like a full body cast. Other days I can’t even stand up on my own. I’m in pain that I’ll have to live with forever because no matter what I do, it won’t go away.
I feel as if people look at me like I am a broken toy. And It drives me absolutely insane that I am always so tired, fatigued.
While I am supposed to be living the best times of my life in college, in my relationships, and life in general, I am home resting due to this invisible disease. What has been the biggest hurdle for you while living with Lupus? The hardest part of having lupus is undoubtedly waking up every day and making the decision to keep going. I have said that before and I’ll keep saying it. But my only other option is to lie down and let it kill me.
I do what I have to because I did not come this far to give up. I desire to be an inspiration to others on this subject.
You can have lupus and achieve your dreams simultaneously.
You don’t have to choose. I promise, I know it’s hard. But we can get through it - together. We are the lupus warriors. What has been your greatest accomplishment? Did you have support along the way? Here are a few facts about me that I would like to share:
I worked as a teller at Red River Credit Union when I was 16.
I purchased my first mustang at 16 & then a convertible mustang a few months later at 17. I really like cars.
I took so many college courses during my high school career that when my dual credits transferred, I was approximately halfway through college already.
I received over $150,000 to Baylor University. I know I have stated this multiple times, but I am very proud. I love my school.
These are some of my favorite accomplishments. While this all happened before my actual diagnosis, I was suffering from lupus severely starting in August 2020 - so my very first semester of college.
Something I wear with pride is the fact that I did not let lupus stop me.
I could have given up and thrown it all away, but I didn’t.
I realized that I worked so hard to get to where I was and the simple thought of quitting was so ridiculous to me. It just wasn’t an option. So after my diagnosis, I finished my first year of college strongly.
I am currently enrolled for the summer term and plan to enroll for fall 2021 within the next few weeks. I definitely did have support along the way. My family is so, so, so supportive. They all showed so much love to and for me.
After my diagnosis, I was completely unmedicated which was the worst pain I have ever experienced.
I couldn’t stand, roll over in bed, nothing. I wished I was dead.
But my family was there for me. My mom helped me into the shower, brushed my hair, fixed my bed to help with the pain, etc. My mother has rheumatoid arthritis so she knows the pain and what helps.
When I wanted to give up and thought I couldn’t push anymore, my mom pushed for me.
My boyfriend of 6 years (we were 13 when we got together and are 19 now) literally stood up for me when I couldn’t. He would wrap his arms around me and stand me up. He did this every day multiple times a day when I needed to stand. He would also give some pain relievers and constantly check on me.
When I was crying due to the pain, he wiped my tears away because I physically couldn’t. He and my mom took turns monitoring me. She would come into my room in the middle of the night multiple times to check on me and he would give her the Mitzi update. I know because I could hear it all.
I get so emotional when I think of all the things they did for me. Unconditional love like that is rare. I’m very thankful for them, and I love them so much.
What advice would you give to someone newly diagnosed with Lupus (or on the search for a diagnosis?) As I have mentioned above, my mom taught me this: Know your body!
You know yourself best. When something doesn’t feel right, seek guidance right away and never let anyone make you question your sanity. Please know you are never alone. There are so many of us lupus warriors who are fighting this battle together.
Join me in making lupus visible and spreading awareness. We can do this! Wow. Mitzi has had to deal with illness at such a young age, and we can see there have been multiple hurdles with her body along the way. We are so happy to see that Mitzi took the diagnosis as a challenge, and has been able to overcome so many obstacles.
Mitzi is on a mission to help inspire individuals with lupus. She plans on creating a Facebook page so she can share her journey with lupus.
The Facebook page will be named: The Lupus Princess Warrior.
We will update this post with a link once Mitzi has it up and running.
Thank you Mitzi for sharing your story and for helping to make lupus visible and spread awareness about this awful disease.
We are on the same path to help patients Rise Up! after getting diagnosis.
If you liked hearing Mitzi's story and you want to read more, be sure to check out our blog and filter to Wellness Warriors. We hope to help you along your journey.
Wishing you Health and Happiness,
Heather and Marc