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Telling it like it is: opening up about my vulnerability

It was quite a shock for me when the independent psychiatrist asked me during my forced stay in the mental hospital what I thought of my diagnosis “schizophrenia”. It was the first time I heard my diagnosis. For the rest of our conversation the diagnosis “schizophrenia” echoed in my head. I associated “schizophrenia” with: being an outcast and violence. It was as if I was told that I was inferior and no longer part of society. Because of my illness, my husband wanted a divorce from me, I saw my child less, I quit my job at the university, and the side effects of the medicines I fell into a depression. I felt lonely and useless.

Hiding my mental illness 
In the beginning I had difficulties talking about my illness. I published writings about my experiences using a pseudonym. When I still worked at the university, I didn’t dare tell my colleagues that I had suffered from a psychosis. After I quit my job, I wanted to find a new job desperately. I was afraid that an employer wouldn’t hire me if I discussed my illness. That is why I didn’t mention it on job applications. I did mention it twice, for job applications in the mental health sector. For one position, they offered me a voluntary job instead of the paid job they advertised for in the ad.

A nurse of the mental hospital tried to help me by saying: “You better say that you have a burn-out. People might become shocked when you tell them you had a psychosis.” That made me sad, I suffered from psychosis, and I was instructed to come up with a different story. I always felt better by telling the truth, especially about something which nearly ruined my life and had a devastating impact on me and my family.

God encouraged me to be open about my mental illness 
Due to the heavy side effects of the medicines, such as contributing to my depression, lack of energy and weight gain, I stopped taking them. At that time, Edward Snowden was in the news talking about the National Security Agency spying  on American citizens. The feeling that the secret service spied on me again came back, and so did the idea that the news contained special messages for me. This ended in my second forced hospitalization. I had to go into the solitary room again and stayed for four months in the mental hospital. During my stay in the hospital, God gave me advice. He said to me: be open about your mental illness and come to my home.

How to “label” myself 
My diagnosis was changed into “schizo-affective disorder”. I do not only have a vulnerability for psychosis but also for mania. The diagnosis “schizo-affective disorder” gave me a bad feeling. I wanted to empower myself. Therefore I decided to label myself as “having a vulnerability to psychosis and mania.” I based this idea also on the research of Robert Scott, which is described by Arnhild Lauveng in her book “A Road Back from Schizophrenia”. She mentions that the diagnosis which is posed on you can form the role you play as patient and how you function.

The reactions when I started being open about my vulnerability to psychosis 
When I discussed my illness at the endowment on microcredits the reaction of a board member was: “My wife suffered from a psychosis as well. It is terrible indeed.” I was astonished. He was so compassionate, and his wife suffered from the same issue!

Later on I became a committee member of the city council. I was unsure about myself due to the stigma of my illness that I talked about it at an off-site day. The other committee members were all very understanding. The councilor shared his experiences about his past. Someone remarked afterwards that he found it a very special day since we had shared our experiences so openly.

Nowadays, I publicly share my experiences with psychoses to help patients, psychiatrists, nurses and all others working in the mental health sector and to inform the general public. My family and close friends know that it is important for me to take my medicines & discuss the dosage with my psychiatrist, to do sports, to walk in the heather fields with my friend, to visit the church and that I may need to cancel appointments if I made too many. In personal encounters with people, it is dependent on the situation if I talk about my mental vulnerability or not. I am following my calling and I am working with many people with the same ideals to contribute to world peace. Recently, I explained after a “peace meeting” that my psychoses were the driving force to become active for world peace and I founded the peace organization Peace SOS and hope to see: A World in Which All Children Can Play.

Featured Image by Daniel Reche from Pixabay

Recent Comments

  1. Renée van der Veen

    Really great stuff this personal story from May May. I recognize much in it, being myself psychosis sensitive. It’s all going in the right direction I think. Thank you May May and thank you Oxford University Press!

  2. May-May Meijer

    Dear Renée,
    Thank you! What good to hear that you recognize much in it. Wonderful that you think it is all going in the right direction!
    I really love the photo that OUP has put besides the article. It fits with a Dutch song which means much to me. There is a sentence in it: “with my eyes open towards the sun”.
    I hope that world peace is coming soon. I am longing for it, everybody is waiting for: ‘A World in Which All Children Can Play.’

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