My Experience Living With an Autoimmune Disease | mikzazon.com

My Experience Living With an Autoimmune Disease

Mik Zazon laying on a bed, on her back, looking towards her left

May 20, 2021

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I was in so much pain I could barely walk without crying…

It’s barely been a few months since I was diagnosed with Lupus, but, for as long as I can remember, I’ve always been some sort of sick. My parents knew something was wrong when I would be hospitalized with staph infections that developed from the smallest scrapes and cuts from playing outside or when I would get a simple cold that would turn into a month long terrible sickness that doctors wouldn’t be able to figure out.

As I got older, more odd signs of an undiagnosed illness began to occur. During my junior year of high school, my hair started to fall out along with weird itchy blisters on my lower back, my left cheek, and my stomach. I was in so much pain I could barely walk without crying, and my temperature was up to 103 degrees Fahrenheit. I went to the ER, and they said it was just a rash and gave me antibiotics. Once I got to college, the recurring UTIs and kidney infections came.

By this point, I was so frustrated with my body. It wouldn’t allow me to do the things my friends had no problems doing, I was lethargic 24/7, and began to rapidly gain weight, then lose it, then gain it back. At the time I was experiencing disordered eating, and while the weight fluctuations may have been related to that, it wasn’t the sole cause. My entire body was inflamed. 

Every single doctor I had expressed my concerns to either brushed it off or just tried to treat the individual symptoms

But what I was most frustrated about was that every single doctor I had expressed my concerns to either brushed it off or just tried to treat the individual symptoms, rather than looking at them all together. I truly began to question if I was making things up in my head based off of the responses I was receiving from them.

For the next 6 years I struggled with health issues related to 3 different eating disorders, the health concerns mentioned above, and so much more that I am probably forgetting to mention. But also during those 6 years I neglected to listen to my body and its cries for help because I wanted so badly to be “normal”. I wanted to wake up excited to live the day with an able body. But because our bodies are smarter than we give them credit for, the signs and symptoms began to get more severe. 

In 2020 I had what doctors told me were 10 severe UTI’s. I basically had one every single month. If you have never experienced a UTI, count yourself lucky. It’s up there on one of the most uncomfortable and painful feelings. On the 8th, 9th, and 10th so-called “UTI”, my doctor admitted me to the hospital because I couldn’t move from the pain I was in, because of my stomach, and the UTI tests were not showing positive results. After the three hospital visits with normal scans and x rays, they sent me home with the same antibiotics. The 10th time, one of the doctors gave me a referral to a urologist.

“Are you sure you aren’t on your period?”

It’s worth noting that this doctor was a man, for the story I’m about to tell you next…

After his assessment, and me explaining that blood was in my urine and my bladder was causing me serious pain, he asked me “Are you sure you aren’t on your period?”

ARE YOU SURE YOU’RE NOT ON YOUR PERIOD?!

In a swift movement I put my jacket on and left.

A month later, another doctor I went to did a more in-depth assessment and found ulcers in my bladder. I was diagnosed with Interstitial Cystitis, an autoimmune disease. From there, that doctor referred me to a rheumatologist that (again) didn’t listen to me and sent me home with no answers. So I went to another one, and was diagnosed with Lupus.

AS YOU CAN TELL, this whole process has not been easy. It cost me so much money. And honestly, if the doctors would have just listened to me it probably would have been solved much earlier on in my life.

Which brings me to point one of me telling you all of this: If your body is telling you something is very wrong, YOU ARE NOT CRAZY. Advocating yourself in situations like these is so difficult because we are taught to simply take what doctors say as truth. Which in 99.9999% of cases, we should. But when it comes to recurring issues paired with doctors not being able to give you answers — question them further. 

My next point is to tell you that to this day, I still am figuring things out. I have a feeling that I will be for the rest of my life. I get frustrated when my body isn’t working the way I want it to because it messes with my productivity, and I can’t be active without problems like everyone else. I have to really REALLY prioritize self-care because when my stress levels get high I’m risking a flare up and my body shutting down.

It’s okay to feel frustrated. And if you are struggling with anything autoimmune related, I know how difficult life is sometimes. But know this — our body is forcing us to slow down because it loves us and wants us to live a long and happy life.

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Writer, speaker, and creator on a mission is to normalize normal bodies and help women like you feel at home in your own skin.

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  1. Amy says:

    Hey Mik

    So sorry you’ve had to go through all of this. I am in the process of being diagnosed they suspect Lupus but, like you I’ve had years of misdiagnosis as well as , Dr brushing me off or telling me it’s just in my head ! Last year after 4 years of being with a male dr I changed to a female gynaecologist who discovered I had PCOS! This was after the male dr telling me that it was basically all in my head !!!
    These drs make me so angry !
    Thank you for sharing it makes me feel less alone during this process

  2. Ally says:

    I have had literally down the LINE all those symptoms. I have selective antigen M disorder (my body doesn’t make the protein that creates antibodies) and it took 10+ year for that. Fibromyalgia was another 7 year battle. It sounds really similar… thinking of you. Getting the diagnosis should be the easy part you’d think!

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