Being invisibly ill

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Oh so scary, but I am not going to beat about the bush: I am ill. Although the current flu epidemic visited our house as well, this story is about another, invisible illness. An illness that controls my everyday life and is the main reason I am not able to do everything I want to. An insight into my life with a conversion disorder and Complex PTSD.

Hardware okay, software not okay

A neurologist told me, after thorough physical examination, that although my hardware (or body) is working perfectly fine, my software (or brain) is completely overloaded. “You have uncountable windows open and that made you sick.” Having a broken leg is easier, also to explain.

Page 347 of ?

So, this story does not begin on page one, but somewhere on page 347 (today 347 days have past since that first diagnosis). My conversion disorder means that, without a physical cause, the right side of my body is in pain and I experience difficulties controlling my right arm, hand and foot. One day my pain is a four on a scale of 1-10, the other day it is a nine, but the pain is always there. Often my right arm feels like I have painted a ceiling the day before. The sensation in my face, foot and lower leg can vanish all of a sudden*, after strain or during or shortly after stimuli (crowded store; birthday; visiting a museum). Then there is fatigue, I am tired quickly, a short walk can be a heavy exercise. Concentrating for hours at length is too much for me. Based on how I feel, I could easily double the forty four years I am according to my passport.

Why now?

The big why question I have asked myself so many times already! The exact cause will remain unclear. Most likely there were triggers, such as too fanatic exercising at the gym and not taking care of myself well enough. The conversion disorder causes my physical complaints, with Complex PTSD as the underlying reason. Complex, because my trauma originates in my youth. My therapists suspect the latter maintains my health problems.**

Hurray, I am in therapy!

Currently I travel to Amsterdam two to three times a week. After being on a waiting list for an extensive period, I am now an outpatient of the SOLK *** clinic at GGZ inGeest. During psychomotoric therapy I learn my current physical boundaries and I am in trauma therapy. A tough process in which I often desire my life returns back to normal, without that horrible pain. My ultimate goal however, is to learn to deal with my old pain and the fact that it can never be undone.

When will I be healed?

Oh my! How I wish I knew the answer to that question! The prognosis for patients with both a conversion disorder and Complex PTSD is not as favorable as for those with one or the other. Of course I fight to win this battle, for 100%, but maybe I have to settle for less. That remains uncertain for the time being.

How about Hoofd&Letters?

Last year I worked for several companies on assignments I could (although that may sound strange) combine with my illness. The plus side of being my own boss, not having to choose between working or being ill fulltime. But, after moving to a new house with my family at the end of 2017, there was no energy left. Accepting new assignments means being open that I can only work for a few hours a day. My therapists prescribe for now that I can only use 50% of my daily energy. That means making (hard) choices and making sure I get enough rest. Some days I dare to work on some new ideas and look at the future. Most important for the moment is trying to remain in the present.

Top athlete

At home I have my nine year old daughter, my boyfriend, two bonus kids and dear dear friends who are such a big support for me. I realise that makes me a rich person and they are all dealing with a top athlete in therapy, which is not always easy. Relaxing does not come natural for me, though I can enjoy little things such as drinking a cup of tea with a friend. Or I go outside for a little while on a sunny day and enjoy nature. My favorite series on Netflix (Elementary for now) and the wonderful piano sounds of Joep Beving help me to forget or soften my pain, if only for a moment. I am not on any medication, though I do have thinking positive, meditation, eating healthy and getting enough sleep on my daily menu.

React or share this story?

The story of my illness is so personal and I feel quite vulnerable to share all of this. Please do not feel sorry for me. My main goal is to share my, sometimes harsh, hike to recovery. In a way that suits me best, through writing. If you want to react, please feel free to send me an email. And if you think you can help someone you know with this story, please share! So many people with an illness such as I have, have not find the right help yet and that is real sad.

*Want to know what conversion feels like? Ask someone to lift your arm and hold your hand. Let the other person ask you questions, for instance about your last vacation. After a while the other lets go of your hand and asks you where your arm is. Chances are it will feel like you watch your arm from as far as your last vacation address.

**Complex PTSD: my own history is too personal to share publicly. Online you can find a lot of information what people with this diagnosis experience. Please note no story or situation is the same.

*** This website is only available in Dutch, you can find information in English by searching for Psychosomatic disorder, conversion disorder and PTSD.

Want to read this story in Dutch? Visit this page.