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Kayla’s Fight Like a Girl Story (Lupus, Fibromyalgia, Endometriosis)

My name is Kayla, and I am 25-years-old. Around age 14, I was hospitalized for about a week with Meningitis. Ever since then, the fight with my body has been on.

I constantly had all-over body pain and discomfort. I would have horrible headaches and be so tired that I could not get out of bed. My joints would swell, I was uncomfortable in my skin, and everything just hurt. On top of the all-over pain, the time to “become a woman” had proven very difficult. My cycle was never regular and resulted in extreme pain.

I went to numerous doctors for my all-over pain. I have lost count of the amount of hospitals, children’s doctors, and tests that I have endured. By age 17, I had experienced 5 spinal taps. All of these doctors and tests resulted in the same thing: it was all in my head. I was probably just having growing pains, and my blood work showed nothing abnormal.

Come my senior year of high school, my headaches were so tremendous that I was on a limited schedule for that year. At age 18, I finally told my parents I was tired of being a test subject and being told nothing was wrong. I was put on basic preventative pain medicines and birth control, but nothing seemed to make a difference. I made the decision to stop going to doctors and to stop taking medicines, outside of my birth control. I continued to suffer with all of my pain.

Around two and a half years ago, my female pains had become so excruciating. I tried out a new OBGYN, and she immediately realized that I had endometriosis. I went through 3 surgeries to try and rid my body of the cysts and adhesions. Since then, we have been trying to get medicines just right so that I am comfortable. The pain is still there but bearable.

As relieved as I was to have one thing taken care of, I still struggled with my whole body hurting. I started to think maybe I did something to deserve the pain, and I hid my struggles from most people. I began to play down my symptoms and struggles to the people that did know. I picked up habits to try to distract myself and dull what was going with my body.

Finally, this year, my PCP referred me to a rheumatologist. After my first round of blood work, I got a letter in the mail saying that I was diagnosed with a connective tissue disease categorized as mild Lupus, as well as Fibromyalgia. One doctor, one set of tests. At first, I was relieved to have an answer. However, it took a while for the whole thing to set in. I almost went backwards with the answer of a diagnosis. I struggled with the side effects of the medicine, as well as how my body was struggling leading up to this point.

It has taken me about 6 months to accept my illnesses/diagnoses. It has finally hit me that I have nothing to be ashamed or embarrassed of. I am at the point now that I am proud of who I am, what I have, and how it has built and molded me into who I am today. My goal is to bring awareness to autoimmune diseases and to be an outlet for people who are struggling just like I was. I am not my illness, but my illness is part of me!

I also have started a YouTube channel of Vlogs that I hope to expand as a way to get the word out about information and the struggles people with autoimmune and invisible illnesses go through.

Submitted 11/03/2017

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Macy

    I love that you turned your challenges into a way to help others. Best of luck to you, Kayla!

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