Monika’s story

"The only reason I feel inferior to other people is my difficult economic situation, which is a result of my periods of illness. My friends have their own flats, good jobs and normal incomes – I have none of those. My dream is to have my own place to live and Internet access at home. It would enable me to work from home, earn some money and feel more like other people.

I was studying French and English at the Vilnius Pedagogical University in Lithuania and doing very well, when I encountered my first mental health problems. I was also busy working – interpreting, translating and giving language lessons – and in the year before my final exams I began having sleeping problems. I did not go to the doctor or take any sleeping pills – I do not know why – and in the end I became psychotic. I had received an offer to do a PhD at the university, but I lost that possibility after going to hospital.

I did not know anything about my illness or the medication I was given when I was first hospitalized in 1996, and the doctors were no help. The psychiatrist said to me and my mother: “She must work; work and discipline will cure her.“ So I went to work for three years, and when the symptoms came back and I had a relapse, I had no idea what was happening to me. I have been in hospital several times since then, but each time the psychiatrist has explained everything related to my illness, diagnosis and medication.

In 1999, I was diagnosed as suffering from a schizoaffective disorder. I was treated in an outpatient clinic, but was not satisfied with the care I was given. My psychiatrist hardly ever talked to me and never asked about my daily life. However, I tell myself I am lucky to have fallen ill in times of vital mental health reforms, and to have had the opportunity to join a patients’ organization.

Before my second psychotic episode, when I was working and able to pay for it, I had psychotherapy. I attended group therapy when I was in hospital, and had two or three personal meetings with a psychologist. The last time I was hospitalized, in 2005, I was treated in the university department, where I received talking therapy from a student, who was responsible for me. I think such therapy is useful, but it should not have been interrupted when I left the hospital and could not afford to pay for it.

The stigma around mental health issues in Lithuania is very strong. My family was shocked when they first learnt that I was ill, and my mother still tries to hide my problems and avoids talking to our relatives about them. It is painful for me, but I do not think we have a choice.
I have never told my old school friends about my problems. It is shameful to have such a desperate illness, and I have cut off all relations with them. I also broke all contact with the people I worked with before I fell ill, since I knew they were gossiping about me.

On the other hand, my friends from university were supportive and helpful. They visited me in hospital, and I could telephone them when I needed to. I always carefully choose those to whom I talk openly, however: only my closest friends. The biggest deprivation caused by my illness has been the loss of my job. I used to work as a translator, interpreter and radio operator for the Lithuanian armed forces, but I was fired after my second psychotic episode. My employer could have given me an invalidity pension or offered me a civilian job, but discharged me, leaving me shattered and disoriented.

At one stage I decided to work as a volunteer in a day care centre for children from disadvantaged families. Not knowing what I now know about stigma and prejudice, I told my employer about my disability pension and the reasons for it. She asked me to bring her a letter of recommendation and the telephone number of my psychiatrist. I worked there for a year, and the parents and children were very satisfied with my work and the language lessons I gave. The director told all my colleagues about my illness, however, and, when I had the opportunity to go abroad with the children, she openly declared that I was just “a crazy person” and should not go anywhere.

My family does not have the means to help me out financially, and I feel isolated and without social guarantees. Housing is another big problem. I would go as far as to say that it complicates my mental health. It took a long time to find a place to live, since some of property owners were afraid of my problems. (Even one of my friends once asked me whether I sometimes leave the gas oven turned on.) I ended up renting a room in a flat, which is not ideal, and am waiting for a ‘social apartment’. It may take up to 20 years to get one, since the municipality is in no rush to solve the housing problem.

On the other hand, I am very happy that I can live independently from my parents, and in a big town, where there are more possibilities. My recovery started when I joined the user organization Club 13&Co. in 2001. It is an independent body that welcomes not only people with psychiatric experience, but family members, friends, professionals and supporters. It has helped me regain my confidence, and offered many opportunities to satisfy my intellectual, spiritual, cultural and social needs. The patients and their friends in the organization have become like a family to me. We always keep in touch, and, if a problem arises, we try to solve it together.

Since joining, I have taken part in a number of activities – courses, workshops, conferences, campaigns, excursions and art exhibitions in Lithuania and abroad. You could say that I have made a kind of career in the organization; after one year I was elected to the editorial board of the newsletter, “The Club13&Co. News“. As a member of the editorial board, I select interesting material from the Internet, translate and put it in the newsletter, to be shared throughout the country.

In 2002, I was elected to the Board of Governors. I started working on a voluntary basis, but for the last two years I have been a partially paid employee, acting as Secretary to the Board of Governors and advocacy project assistant. Club 13&Co. has given me the chance to choose the extent to which I work, depending on my abilities and health. Unfortunately, the organization’s financing has been interrupted, and we have to spend a lot of time writing new applications for project funding.

Looking back, I would say that I have been struggling, growing and developing along with my organization. Step by step, I have regained confidence in myself and discovered that I am still capable of many things. And I am not only using my former skills but also discovering new ones. Today, I am not afraid of speaking publicly about my psychiatric experience in front of a big audience or on the radio, for example. (Appearing on television would still pose a problem, because of stigma.)

Besides Club 13&Co., I think the most important factor in my recovery has been my successful cooperation with a pair of mental health professionals on its Board: psychiatrist Danguole Survilaite, the Chairman, and a psychiatric nurse. These two professionals encourage us to attend seminars about psychiatric illnesses and rehabilitation, and read articles and books on the subject. For me, knowing a great deal of theoretical and practical things about my illness helps me to prevent a repetition of psychotic episodes.

Sometimes I regret never having finished my Master’s studies. I needed only one more year, but now I can no longer pay the fees. In addition, I do not feel very confident about matters such as my health situation, exam stress and stigma from academics. On the other hand, I participate in a number of stimulating activities and meet many interesting people through Club 13&Co., so I live a meaningful life despite my illness."