‘My legs froze. I collapsed. ‘It could be worse.’ Embarrassed, I was carried away in front of an entire field of people.’: Fibromyalgia warrior raises awareness for invisible illness

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“I started experiencing horrible pain four years ago. This pain began in my legs and occurred mostly at night. My legs were extremely restless and the pain was intense. Some nights I would be curled up in a ball, trying to get some sort of comfort, and I would think to myself, ‘What is happening to me?’

I finally went in to see my primary doctor about my leg pain. I thought it could be restless leg syndrome, but the medication I was prescribed for that didn’t help me at all, so I went back to the doctor. I was referred to a rheumatologist. In October of 2016, I met with them to finally get some answers. I remember being so nervous and scared because I truly didn’t know what to expect. When they handed me sheets of questions to fill out, there was one with a human diagram instructing me to ‘shade the painful areas.’ I shaded the whole body.

Courtesy of Stefani Banda

My mom and my oldest sister were with me when I received my results. All my blood tests for autoimmune diseases came back normal, but my Antinuclear Antibody test was positive. The doctor then handed me sheets of paper with the word ‘Fibromyalgia’ written at the top. She said, ‘You fit the description for someone with this illness.’ I felt relieved it wasn’t something worse, but I was still scared as I didn’t know how this would impact my life.

My family and close friends have been super supportive. I have found it difficult to talk to them about how I’m feeling because I don’t want to be judged as lazy or complain too much. My mom has been a huge help; she guides me out of the shower, helps me walk around, and provides a shoulder to cry on. I appreciate everything she has done for me and continues to do for me.

Courtesy of Stefani Banda

My love story with my boyfriend Mark started in October of 2018. He has been a big part of my journey with fibromyalgia. He had done the research and even made me a fibro journal titled ‘SteffiStrong.’ He has been with me through the struggles, the defeat, the anger, and the sadness. He has never left my side and I’m so thankful for that because I truly don’t know how he does it.

I know it has to be frustrating and hard to see me in pain, but he never complains. If I need my meds, or my walker during a tough flair-up, or my hair brushed because I’m completely exhausted after showering, he doesn’t hesitate to help. Mark was an angel coming into my life at the darkest of times. He is understanding and shows up for me every day. He says, ‘No one fights alone’ and reminds me no matter how down or lonely this illness makes me feel, I am not alone. I thank him for loving me and I love him more than anything.

Courtesy of Stefani Banda

Activities have looked a lot different over the past two years since my diagnosis. My favorite place has always been Disneyland. I used to go yearly. My last trip was in July 2018 with my best friend, Leslie, and it was a different experience for me. It was really hot and the heat now affects my fibro and makes me extremely fatigued. I had to take breaks more than usual and took naps, which was unusual for me to do. There was a lot of walking involved and that exhausted me. Thankfully, my friend Leslie and her husband were very patient and understanding.

Courtesy of Stefani Banda

I also love baseball and go to games frequently. This experience is different now as well. I have to take my time walking to my seat because the stadium is big, but I’ve learned I have to go at my own pace.

Last year, there was one game I found extremely difficult. I went with my friends, my boyfriend, and my mom. It was a cold night and we had done a lot of walking by the end of the game. My legs were in excruciating pain. After the game, there were fireworks and fans could watch the show from the field. We were walking down to the field and I just froze. I felt like I was going to collapse and I couldn’t walk anymore. I had never felt like that before and I was weak. I was carried to a wheelchair. This moment made me break down.

I felt so embarrassed because I was being pushed in a wheelchair. I was sad I missed out on going on the field because I just couldn’t do it. I hated having everyone see me that way. I got in the car and while I reclined the seat back to get comfortable, I thought to myself, ‘I never want to go to another game again.’ The experience was so embarrassing, I really thought I wouldn’t go again.

But I went to a game after that. I decided I’m not going to let fibromyalgia ruin my life and take away the things I love to do. Sure, they will look different now, and they come with limitations, but I’ll still do my favorite things.

Courtesy of Stefani Banda

Today I manage my care by listening to my body, resting, taking my medications and vitamins, and just taking it one step and one day at a time.

Sometimes people say, ‘It could be worse.’ I want to tell them that it’s true, but what I have is pretty horrible, and it’s okay to be sad and mourn the life I once had before this illness. It’s okay to get mad and cry. I am constantly crying out of pain, frustration, and tired of being tired. I want others to know it’s okay not to be okay, to know that we’re not alone and we are warriors who fight this battle every single day. For 7 years, I taught preschool until the pandemic hit and closed my school indefinitely. Those kids gave me a reason to get up out of bed and fight each day. I’m grateful for them and the motivation they give me.

Having an invisible illness like Fibromyalgia is hard. Many people don’t get exactly what it is, even I have had to research a lot. Looking fine on the outside when you’re in pain and hurting on the inside is the sickest joke.

Blood tests and numerous doctor visits are exhausting. I have to take breaks because it’s emotionally draining. I can’t stress this enough, though: if something doesn’t feel right, speak up. I had to change my primary doctor because they were just medicating my illness. I’m so glad I made the change because my new primary doctor believes me and wants to find answers while also never doubting what I say and feel.

I hope my story gives someone else a little hope and helps them realize it’s okay to talk about their illness. It’s okay to spread awareness and we shouldn’t feel bad for sharing! It’s okay to listen to your body, to cancel plans, to know what’s best for your health, and to speak up for yourself. I don’t share for pity or attention. I share just a glimpse of what I deal with daily because spreading awareness is so important to me. I will never stop being the biggest advocate for myself.

Stay strong warriors, we are in this together.”

Courtesy of Stefani Banda

This story was submitted to Love What Matters by Stefani Banda. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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