Schizoaffective Disorder: "I just knew something was wrong with we..."
Published Sep 14, 2022 • Updated Sep 15, 2022 • By Bianca Jung
alof73, a member of the Carenity community in Germany, has been living with schizoaffective disorder for almost 20 years. He tells Carenity about his daily life with the disease as well as his treatment.
Discover his story quickly!
Hello alof73, you have agreed to testify for Carenity and we thank you.
First of all, could you tell us more about yourself?
I am 49 years old, I am single and I have a daughter of 22 years. She is in Leipzig and studying. I am in very good contact with my daughter, she is my ray of sunshine. Due to schizoaffective disorder, I am cognitively limited. I have trouble living on a daily basis and I am usually "drowsy". I like to walk around and I often surf the Internet. My mother "takes care" of me a bit, but she is also tired. I still have a garden, where I also spend my time.
You have depression and schizoaffective disorder. Could you tell us how many years you have lived with these disorders? Were they continuous or did you experience periods of remission and relapse? What do you think were the reasons for this?
I had my first acute phase in 2003. I was in a small hospital, but no one could tell me what was wrong with me. I didn't find out until 2006, when I had an acute phase and was hospitalized in psychiatry. That's when I learned a lot about mental illness - something I didn't know before.
My condition is often changeable. I rarely have days when I feel well. In my case, schizophrenia, depression and mania play a role. Most of the time, I am "out of it" and under a bell, so I am not thinking clearly. And the depression is always with me. I am often sad. I am already in my third psychotherapy.
What were the first symptoms? What prompted you to see a doctor?
In 1999 my daughter was born and in 2000 we had a new boss, a so-called manager. He was noisy, he mumbled... Then the stress at work increased. And at home, there was also stress because my daughter was often sick and my ex-wife was struggling. I wanted to cope with everything. And in 2003, I started having hallucinations. I smelled coal dust everywhere and was convinced I had mold in my throat. I was in an acute phase at the time and I didn't know what it was. I just knew something was wrong with me and I didn't perceive it as a disease. My ex-wife was overwhelmed by it all and when she left home in 2004, she told me, "Get your life together''.
What is your support?
Since 2006, I've been on medication - Risperdal and I've taken several antidepressants. But none of them really worked. So I went to psychotherapy and I also went to the day hospital. Now I'm in my third psychotherapy session and I meet every 2-3 weeks with a staff member of the socio-psychiatric service.
What has been the impact of schizoaffective disorder on your personal and professional life?
I continued to work in the field engineering department until 2010. The stress was increasing. Then I was offered to work in the Erfurt office or to move. I went to the Erfurt office, driving 130 km a day. It was getting harder and harder for me, I was sleepy and it was hard to concentrate. After work, I was "exhausted" and went to bed so I could make it through the next day. I continued to work more or less until 2013 and in between I had several extended stays in clinics, day hospitals and rehab. Then I applied for a pension in the spring/summer of 2013. I waited about six months and received a positive response. So I have been receiving an EU pension since 2013. Until the end of 2018, I was on a fixed-term contract, now on an open-ended contract.
My quality of life in general left and still leaves much to be desired. I often "hang out" and find it hard to keep myself busy.
How do you feel today? What are your plans for the future?
As I have already described, I am often sleepy, not thinking clearly, lacking in energy and moody. I have no concrete plans. My greatest wish is that my daughter will be okay and that she will follow her path.
What have you learned from your years of depression? Do you think the disease has changed you? If so, how?
Well, all I've learned is to deal with it. Of course, the disease has changed me, as I've already described.
Was it easy for you to talk about schizoaffective disorder with those around you? Did they understand the disorder? Did they support you?
At first, I was very unsettled. Over time, I learned that it's better to talk openly about your condition to others. That way, they can prepare themselves and deal with it. Sometimes I get advice. Today, I have my mother, sister, aunt and some good friends who support me. It is important to have such social contacts.
What do you think of patient exchange platforms like Carenity? Do you find the advice and support you are looking for?
I think Carenity is great and I have already read many articles and testimonials. The good thing is that patients can exchange information.
Finally, what advice would you give to Carenity members who are also affected by depression?
You should seek professional help, such as therapists, and take your medication regularly.
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