‘There’s nothing there.’ The tumor was breaking the bone from the inside out, but nobody believed me.’: Woman survives ‘invisible’ nervous system attack, shares mental health journey

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“When I was younger, I was filled with energy. In my mom’s words, I was ‘funny, kind, caring, sensitive, unpredictable, zany, and dramatic,’ similar to how I try to be now.

I loved to be outside as a child. I loved playing with my animals and spending time with my family and my ‘second mom,’ Porsh. I always wanted to be just like my older brother because, in my eyes, he was the bee’s knees, and he still is.

A young boy and his baby sister
Courtesy of Lauren Gebka

I loved being around my family so much that when it was time for me to go to school, I would scream and cry because I didn’t want my parents to leave. My mom often had to stay for over an hour until I was distracted enough for her to leave. This continued until I was around eight.

The thing is, it never really stopped, just the crying and screaming did. The lonely feeling and wanting to be around the comfort of my family never stopped.

I don’t remember much about my first diagnosis of ADHD, I just remember being taken out of school early one day and going to play in this lady’s office while she asked me questions. I found out later she was a child psychiatrist. I was put on medication to help me concentrate. I was eight. I remember my dad didn’t like me being on this medication, and I hated taking it, so much so that I used to hide the pills every morning instead of taking them. My mom later found out and would monitor me taking the pills.

I don’t know why I didn’t like taking them, I just felt different when I did.

I stopped eating my lunch at school, which I got in trouble for, so I then started giving my lunch away so my parents wouldn’t find out I wasn’t eating.

The medication did, however, do its job in getting me to stop talking in class. In fact, it got me to become scared to ask questions when I was confused. It got me to stop asking for help with my work. It got me to stop being confident in my work and myself. I was still bad at math though.

Until recently, I never believed I had ADHD. I believed I was a child who was desperate to be outside and climb on trees and run around. When I asked my mom why she took me to the psychiatrist, she told me a story that makes me laugh every time I hear it.

Apparently, when I was younger and I would do anything requiring me to concentrate, I would stand on my head. I’m talking head on the couch and feet in the air…I’m not sure if my mom wanted to take me to a psychiatrist or get an exorcism.

A little girl sitting by a birthday cake
Courtesy of Lauren Gebka

She said the doctor explained to her the reason I would do this is that it was my brain’s way of trying to stimulate itself enough to be able to concentrate.

I stopped taking my medication when I was about 11. My dad didn’t like the way it changed me, and I’d never been too keen on taking it anyway.

My life went on with only minor inconveniences until I was 14.

When I was 14, I was diagnosed with a nerve condition in my right leg called complex regional pain syndrome (CRPS).

CRPS is known to be one of the most painful conditions in the world. It attacks your nervous system and causes you to feel pain 24/7. I was extremely lucky my parents could afford the treatment I needed in order to live a semi-normal life. However, it did cause me to miss a lot of school because of the pain I was in.

A young woman lying in a hospital
Courtesy of Lauren Gebka

I lost every friend I had. CRPS is an invisible illness. People couldn’t see it; it’s not like a broken arm where people can see there is something wrong.

My best friends turned on me, spread rumors about me. They claimed I said I had this to get attention and it didn’t exist. They made me feel like I was completely alone in the world.

I became an outcast. Nobody would speak to me. I dreaded going to school, I just wanted to sleep. I hated myself for the pain and worry I caused my family.

Later that year, I felt a different kind of pain in my leg, and bruising started to appear. I told my physiotherapist, who sent me for an immediate MRI. After they took the images, they claimed there was nothing there causing the pain. I cried and shouted because I felt like nobody believed or listened to me.

The next day, my dad got a call from the doctor saying they had, in fact, found a tumor in my leg, right above my central vein and nerves in my right leg. The tumor was breaking the bone from the inside out, and the bone fragments were going into the nerves and veins.

A young woman and her father surrounded by flowers
Courtesy of Lauren Gebka

It took about 3.5 hours to remove the tumor.

I’ve always found it funny how after my surgery, everyone at school started to believe my pain, and the rumors stopped.

Maybe I was naïve and stupid for doing this, but I forgave my friends for the rumors they spread and allowed them back into my life. The rumors didn’t stop though, I just stopped hearing them.

I was never the same after that. The pain got better, and I worked hard to learn how to walk again and become ‘normal,’ but I was never myself again, I felt I couldn’t be because I would be judged.

Two years later, I was a mess. I could not do anything. My brain was abuzz, and I cried all the time. A teacher asked me to stay after class and asked me to see the school psychologist, who then legally had to call my mom due to things I’d told her. I was immediately sent to a psychiatrist.

I was diagnosed with depression, anxiety, and various other mood disorders. I got put onto a bunch of medication and would have follow-up appointments all the time. At one point, I was seeing my psychiatrist once a week. I was scared and depressed and useless.

I will always remember feeling the way I did—like I didn’t belong anywhere.

There were many times when I almost gave up, but I never did, and for that, I’m proud and grateful.

When I turned 18, I decided to move out of the house and city I’d lived in my whole life and move to Cape Town to follow my passion and study acting.

My life changed the moment I landed in Cape Town.

At university, I met the kindest and most amazing people, people who were like me, who were different, who thought differently. People who finally made me feel like I belonged somewhere.

A young woman at university with a clapboard
Courtesy of Lauren Gebka

There was no specific moment or person who made me feel this way, but I felt like people finally had my back, people finally believed in me, people who weren’t my family accepted me for who I was.

Nobody spread rumors, and if people did, they were the ones who others looked down on. These people, this community, saved me and showed me what friendship is and what it feels like to be able to live the way you’ve always wanted to.

A lecturer at university would always tell me how special I was and how people would be drawn to me and my personality. He then showed me this was true. He told me not to be scared and to go for it. I was always too scared to listen to him because he was technically being paid to say this—except he wasn’t, he was honest, and he made it so I believed him. My confidence started to come out, and I finally felt like myself for the first time since I was diagnosed with ADHD.

I still struggled/struggle with anxiety and depression, but it’s something I’m working on consistently. The love and care and joy my university showed me made me feel like I can get through it, and I know there will always be people there to support me and care about me. Thinking back to that time and those people makes me feel warm and happy, it gives me faith there are good people in this world and you don’t even have to look that hard to find them.

It inspired me to be a kinder person and to show love and happiness to everyone around me.

I’ve learned a lot in my 21 years, but I’ve still got a whole lot to still learn.

The biggest thing I have learned is that kindness can go a long way. Learning to love yourself is damn hard, but it’s important and necessary because, at the end of the day, you’re all you’ve got.

I wish to be for others, and for myself, the person I needed when I was younger. The person who never judges or criticizes anyone. The person who supports and loves and treasures everyone in their life.

A young woman with two friends and classmates
Courtesy of Lauren Gebka

If there’s one piece of advice I could give, I would say to care less about what others think and care more about how you feel.

It’s a lot easier said than done. It’s hard to be yourself in a world that rewards people for being perfect. It’s hard to chase what you want when, from such a young age, we’re put under pressure to choose exactly what kind of life we want when we’re 50.

I spent too much of my life caring about the rumors spread about me and caring about what people would think about me. I would wear the clothes others would like, and I would say the things people wanted me to say. I still do sometimes, but it never felt right, and it still doesn’t.

A young woman with a pair of friends
Courtesy of Lauren Gebka

This year, I’ve decided to focus on how I feel. I’ve decided I need to do what’s right for me and my mental health. I’ve decided to be a better person for the world and for myself.

To be honest, this is the hardest thing I’ve done because I’ve never been fully myself, nor have I given enough attention to how I feel. I’ve always been like most of the world and cared about what everyone would think, but since I’ve stopped caring about what they think, I’ve started to fully understand myself and what I need in order to be happy.

I still fall victim to doing things to make others happy rather than what will make me a better person, but I’m learning. And if I can, then so can you.

You’re a lot more resilient than you think, and no matter what, you deserve everything good that comes to you.”

A young woman posing with a flower in her hair
Courtesy of Talia Mdlungu

This story was submitted to Love What Matters by Lauren Gebka of Cape Town. You can follow her journey on her Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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