Conversion Disorder: Is Anxiety Attacking My Body?

Conversion Disorder: Is Anxiety Attacking My Body?

by Susanne Kooijman

| PTSD: My Story Project #014

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I decided to participate in the PTSD: My Story Project and share my experience with conversion disorder in hopes that someone can relate to it and find comfort in knowing that they too, can overcome their worst times.

My Story

In my early twenties, I was a shy and sweet girl. At school, I was social and had lots of friends. I also did well and had good grades. But one afternoon, I suddenly fainted right in front of my friends. I was so scared, this feeling of not having control… I never wanted to feel it again. That is when I started to avoid situations, people, basically anything and anyone. This led to me developing agoraphobia, a severe anxiety disorder that impacted my life so much. I had no social life, did not get to finish school, and it even led me to stay home for six months in a row. I would hardly leave my room, let alone leave the house. Standing in the garden was the only fresh air I would get. Even leaving my house was a massive and overwhelming task.

After years of therapy, taking small steps (sometimes literally), working hard on gaining trust in myself again, and understanding the process of fainting and anxiety, I finally could say that after ten years, I was truly healed of my phobia. I got on with my life, moved to my own home, got a job, and was just my happy self again. Sounds good right? Then where does PTSD come into play?

Read also ‘“You Are Not Alone,” Comforting Message From a Nurse by Valentina Mirto‘

Carbon monoxide poisoning

I had always been quite sensitive to fainting and dizziness. I was always a tiny and skinny girl, so I thought I was just extra sensitive to this. Then one day, when I was having a shower at my home, I fainted. Out of the blue, I was out, unconscious. I don’t know what exactly happened after that. But I do know that I woke up in my living room, even though I passed out in my shower. I even had the shower curtain sort of draped around me. Still in shock, I looked around, and it slowly sank in. Did I really just faint?

I instantly called my parents, as they live right across from me. They were at my house in a minute. They noticed my shower was still running, and I was dazed and confused. Turns out I had fractured several ribs and was just in a lot of pain. I went to the hospital, got some medicine, and was told not to take my showers too hot. They basically told me, it was the temperature of the water that was to blame. On the inside, I knew better. But again, I moved on and got on with my life, despite the pain.

Then the next time I took a shower, I passed out again. Now I knew for certain it couldn’t be a coincidence. A second time? No way! So I called the fire department, and they concluded I had suffered from carbon monoxide poisoning. My walls were still wet from my showering, and I was confused, dazed, scared. Was this for real, did this just happen to me? They were saying how I was lucky to be alive. But that did not fully land in my head just yet, I was still processing everything.

All the machines that caused the carbon monoxide to leak into my home were being replaced, but of course, my fear did not leave me. I did not feel safe at home, in my body and mind. I started to feel anxious again. And I was not prepared for it.

Alone and misunderstood

That anxiety then only worsened when I started having blackouts during my daily routines. What felt like all of a sudden, like a lightning bolt. I would lose consciousness and regain it a few minutes later, then experience all kinds of feelings of disorientation and sometimes pain, as I would, on some occasions, hit my head or other body parts during my fall to the floor. I went back to the hospital throughout that year, too many times to count, and had all kinds of tests done. My heart was monitored, I was checked for brain tumours, had brain scans, and so on. Everything that could be checked, was checked. And luckily for me, everything was fine. I was healthy, which was such great news.

But of course that left me with all these questions. Why was I having these blackouts? Was there still carbon monoxide leaking? Am I safe to leave my house? What if I have a blackout when I am on the road? After several doctor visits, I still had no answers. What I did have were nightmares, sleepwalking, flashbacks, anxiety. This whole situation was so stressful for me. Not knowing what was going on, feeling alone in my struggle, not having any answers.

Going to one therapist and then another and another. They all said the same thing, ‘We can’t help you.’ Well, isn’t that exactly what you don’t want to hear?! My doctor wanted to send me to a clinic where I could be tested for epilepsy. The thought of that alone freaked me out to no end, so I declined that because I knew in my heart (that inner knowing again) that that was not it, that was not what I had.

Conversion disorder

Then I found an article online about conversion disorder. It was like they were talking about me. I finally felt heard, seen, and understood. After the trauma that occurred to me, my brain was still telling my body that I was not safe. It constantly felt like a threat and whenever that peaked, I would black out. Those blackouts were called PNES, psychogenic non-epileptic seizures. It had a name! The thought of finally having an answer gave me so much rest. The relief that came with that knowing decreased my anxiety. I no longer had nightmares and felt a sense of power again.

But my healing was far from over, it actually just started. I found a lot of peace and calm in spirituality. I was doing meditation, yoga to reconnect to my body in a healthy way, and breathwork to not see my breath as an enemy (which is very common when dealing with anxiety). But also learning to have healthy boundaries, love and forgive myself. Knowing I did nothing wrong, and all along, I knew I was healthy, just misdiagnosed and misunderstood.

Read also ‘The Impact of Trauma – Nothing Can Prepare You by Dawne McKay‘

Conversion disorder led me to where I am today

So, I did lots of the work myself, as most therapists and doctors had very little or no information or understanding about conversion disorder. That entire healing journey, through discovering more about my condition and learning the techniques to calm and heal myself, is what led me to be what I am today – a coach in self-healing techniques and self-love, which I am very grateful for and proud of. I love sharing my journey, just like I am now, to help others or be the guide in their own journey.

At the moment, I have found help in the form of someone who is actually an expert in conversion disorder, which was a true relief for me to find. I am still healing and have come such a long way already. One of the things I learned is that you don’t have to be fully healed or know all the answers in life to help someone else on their path to healing. I truly hope my story and message give you hope. Seeing a light at the end of the tunnel can be so hard when you are in the midst of the dark. I know, I have been there, and I got out. You can too! I believe in you, even if you don’t yet believe in yourself.

Dear reader, thank you for reading my story about my experience with conversion disorder and how PTSD affected my life.

Susanne Kooijman

Susanne is 41 years old, born and raised in The Netherlands where she still lives happily on her own. Before being a coach she was a music journalist, artist manager, and communications manager. Her love and passion for spirituality in combination with all the lessons she has learned in her own healing, is what drove her to become a coach. Besides coaching, she has many passions. Music is her joy, but also spends time with loved ones, being in nature, and enjoying the small things in life like reading a good book, watching art in a museum, or visiting a zoo. You can find out more about Susanne on her website or her IG account.

Read more real-life stories from trauma survivors here: ‘PTSD: My Story Project‘.

PTSD: My Story Project

Do you have experience with PTSD, or do you take care of / live with someone who has? Would you like to share your story in a guest blog post? 

Aim

I’m not an expert or a health professional, so the aim of this project isn’t to offer professional advice. Neither is it to pity those who experience PTSD. That’s not what I want. My aim is to raise awareness of PTSD. By sharing your story, you can inspire and empower others. You can highlight the methods that helped you. This way, you can encourage others to reach out for help.

And it may help you as well. Perhaps it’s something you feel like you’re not able to talk about within your closest circle and would like to connect with others in a similar situation. It’s nothing more than bearing an untold story inside you. The fact is that our society still lacks an understanding of mental health.  Therefore, I’ve decided to share my story and invite others to join me in this project and write a blog post about their experience. By working together, we can help destigmatise mental health problems and promote well-being.

To be featured

If you would like to join in and share your story on my blog but don’t have the experience of writing a blog post, this isn’t a problem. You can still contact me, and I’d be happy to assist you with the writing. And you can use a pseudonym if you wish to stay anonymous. You can share as much of your story as you want in a way you feel comfortable with.

The only thing I ask is that you mention ‘PTSD: My story project’ in your post and briefly state why you have chosen to take part in it.  You will be allowed to approve the post before publishing it, should it be edited.

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