Illustration: Otávio Santiago, otaviosantiago.com
Torsten Poggenpohl had to cope with two life-changing diagnoses within a short space of time. He is HIV-positive and the infection is already well advanced. And he was diagnosed with bipolar disorder. In this interview, Torsten Poggenpohl explains how he learnt to deal with this mental illness and how he got his life back on track.
When did you realise that your mental state cannot be explained by temporary mood swings, but has deeper causes?
Torsten: I didn't actually realise it until I was already in the closed psychiatric ward in Stuttgart. Those close to me had realised it much earlier, but I didn't give them any hints.
I think the most difficult moment with a mental illness is gaining introspection - the ability to recognise that you are ill and need help. Probably the most important moment and this process within the illness took a while for me.
My personal turning point was reading Sebastian Schlösser's book "Lieber Matz, Dein Papa hat 'ne Meise", in which I completely recognised myself. I was already in a psychiatric ward at the time. I knew that I had what he had. It was only afterwards that I realised what situation I was actually in and how much scorched earth I had left behind.
What was your life like at that moment?
From one day to the next, I was catapulted from a middle-class life to the abyss of society. I had completely dismantled my previous life and spent an insane amount of money in a manic phase.
How did it come about?
I had worked as an area sales manager for a luxury fragrance company, was very successful and responsible for millions in sales. I then temporarily took over another area of work from a colleague and therefore often worked 80 hours a week. This pushed me over the edge in terms of mental stress, but I didn't realise that at the time. However, it probably had the effect of triggering my genetic bipolar disorder.
In my mania, I wanted to open an exclusive nightclub. It was a megalomaniac project that I wanted to pull off in a big way. Not only for this, but also for my other restless life, I ran up huge debts.
Was there no one around you who tried to stop you?
It is typical of a manic person that they always feel they are absolutely right and reject all good advice. I had previously been admitted to a psychiatric ward in Hamburg for a week when I was severely manic, but I couldn't be taught anything there. I didn't want to admit what was wrong with me. For the people around me, I was almost unstoppable in this state.
You were diagnosed with HIV in the middle of this manic phase. Why did you get tested back then?
I had to take out life insurance for my loans and, in turn, submit an HIV test. I hadn't expected the test to be positive. But what was worse was that my helper cell count had already dropped to 16, which meant that my immune system was already dangerously weakened and I had to be treated immediately. It really was a matter of sheer survival. I was therefore put on sick leave. My employer then terminated my contract without notice while I was on sick leave, regardless of the consequences. So I had also lost my job and therefore my income.
Fortunately, I had legal expenses insurance and was able to file an action for unfair dismissal despite the exceptional psychological situation. With the extraordinary dismissal without notice, the employer had clearly expressed that he had no interest in working with me for even one more day, so there could be no reinstatement.
Within a very short space of time, you were in a life-threatening situation, both mentally and physically, and at the same time you were deprived of your livelihood. You had amassed a mountain of debt and disappointed many people close to you as a result. How did you cope with it all?
I was in a manic state during this time and was correspondingly restless and unstable. It's difficult for outsiders to understand. Luckily, I'm a pragmatic optimist who embraces life. That probably saved my life. Because this mania sucked me in and only spat me out again months later, so - thank God - there was no room for gloom, melancholy or any bad fantasies.
Did you find the realisation that you suffer from a biopolar disorder liberating or rather frightening and disturbing?
It was indeed a kind of liberation. From that moment on, everything became so much easier. I had really developed into a model patient with a lot of self-discipline, because I never want to suffer a relapse again. And I know that this is also in my hands. For example, from that day onwards I didn't drink a drop of alcohol because it doesn't go well with my mood-stabilising medication and can trigger the bipolar disorder.
And how did you cope with your HIV infection? The test result came in the middle of a manic, euphoric phase.
I belong to the safer sex generation. That means I was well informed about HIV and always used condoms. However, I have also had two high-risk contacts in my life. Once, a condom broke during sex with my first boyfriend, who wasn't completely honest. The other time I had sex with someone who meant a lot to me and whom I therefore trusted very much. In one situation, I therefore didn't pay attention to safer sex. Although I am otherwise a very rational person, I managed to completely ignore these two events and had never taken a test of my own accord. Until I had to do it for life insurance.
Nevertheless, I took the diagnosis very seriously, even if I wasn't deadly serious. I was never hopeless, I'm too much of a life-affirming person for that. However, I initially had enormous difficulties with the treatment. As it turned out later, my medication triggered the mental illness and really fuelled this carnival of synapses in my head. At times, I was therefore advised to stop taking my HIV medication. But my helper cells had only just risen a little
It is almost impossible for outsiders to empathise with your situation at that time: You were seriously ill physically and mentally, ruined financially and professionally and there was no light on the horizon. What was there to support you? So what was keeping you alive in the truest sense of the word?
Bipolar disorder, like many other mental illnesses, is a marathon. But before you can even start running, you first have to know which way to go. This is an exhausting process of self-knowledge and self-reflection. I was incredibly lucky to have the support of many people around me. People who supported me stage by stage in a relay race. When one of them was exhausted, they passed on the baton.
Why was it so important that different people shared this task?
You can become a real puke during a mania. Many people who suffer from a biopolar disorder or other severe mental illnesses often leave a lot of scorched earth behind, which also breaks up friendships. So if anything has saved me, it's the incredible network around me. It has supported me through all phases of the illness.
In bipolar disorder, the condition moves back and forth between two extremes. At one extreme is mania, at the other is deepest depression. In this state, even my speech centre was affected and I simply stopped speaking. That's why friends used to visit me in the clinic in pairs so that they could at least talk to each other.
I went through some really dark times, but for over ten years now my medication has been so well adjusted that I no longer have these mood swings.
Now, both mental illness and HIV, but also homosexuality, are still associated with stigmatisation and fears of various kinds in parts of society. Was it a problem for you to have to go through several coming-outs at once?
My gay coming out was anything but easy. I grew up in a small town near Osnabrück and went to a private Christian grammar school there. I would never have been able to come out there. So I only came out at the age of 22 during my studies, but only to school friends and only some time later to my parents. Unfortunately, their reactions weren't great and it put a strain on our relationship for many years. Funnily enough, they reacted very differently to the two illnesses. They were only afraid that their child might die.
Unlike when I was gay, I dealt with my illnesses very openly and proactively from the very beginning, for example in my working environment. I didn't allow myself to be stigmatised at all. My experience is that if you talk openly about your HIV infection or mental illness, you take the wind out of the sails of potential opponents. I know that not everyone can do this. As I've always been a rather extroverted person, it's certainly easier for me than for some others. In a way, I've put the whole world on notice. That certainly had something to do with my mania. But once a message like that is out there, you can't catch it.
How did you deal with your HIV infection yourself?
I got on quite well with it. Until my first serious date after my diagnosis. We had some really romantic weeks together, making out, sitting in the park together and evenings out at a restaurant. Then I finally dared to tell him that I was positive but also well treated. He was very confused and I was surprised at how little he knew about HIV and the treatment options. I did my best to educate him and allay his irrational fears - but to no avail. His brother, who had seen a photo of me, warned him about me because I supposedly looked ill. I was devastated after that and my self-esteem was at rock bottom. Then I found out about the Positive Encounters by chance.
So you travelled to this nationwide conference by and with people with HIV?
It was simply sensational for me to meet 400 people there who are all HIV-positive and were able to deal with it as a matter of course. This experience completely changed my own attitude. From then on, I put on a kind of protective shield and simply let people's stupidity about HIV bounce off me. I know that I can't necessarily change people, but I can change the way I treat them. When I meet someone new, I tell them about my illnesses right at the beginning. Either someone can deal with it and wants to learn - or not. In that case, please let them leave my life straight away. Because my time on this planet is finite and I spend it with people who are worth it, not with those who can't deal with my underlying illnesses.
What helped you find your way back to life after your time in hospital?
In addition to my voluntary work in the patient café, which gave me the necessary daily structure, I set up a regulars' table on a private level after my release from the psychiatric ward. There, we were able to talk about our experiences in the clinic and our time afterwards in an informal and relaxed atmosphere. If someone from outside had been watching us, they would never have realised that this fun, lively group had met at the lowest point of their lives in a psychiatric ward.
Wouldn't that have been possible with people from your family or circle of friends?
Not in this way. For one thing, you want to be seen as recovered and able to perform again in everyday life. On the other hand, in this very special context, we were able to share our specific experiences at eye level, such as how a particular medication works or how we deal with sleep problems.
You have recorded your experiences in your book "einfach!ch schwul.bipolar.positiv." and talk to visitors at the readings. In your opinion, how does the gay community deal with mental illness? How much awareness is there in the scene, how openly is it talked about?
At these events, I experience time and again how good it is for visitors that I talk about my illnesses so clearly and honestly. And this openness encourages many people to be more open about their own illnesses. It would therefore not only be good for the community, but for society as a whole, to find a better way of dealing with illness in general. This means, for example, that we allow people to be ill and also to take the time to recover.
Why is it so important to deal with mental illness or HIV infection?
I found it frightening when I heard that 75% of people with HIV keep their status secret. On the one hand, I can understand that. However, I also know that such a life secret can make you mentally ill. That's why it's worth fighting for people to be able to be open about their HIV infection or their mental illness, because keeping it secret adds another burden to their shoulders and makes life even harder.
However, opening up to your own environment also harbours the risk of being stigmatised by others.
You can only destigmatise mental illness, HIV infection or homosexuality if you show your face and tell your own story. Not all people are able to do this. That's why I raise my voice for them to some extent. I've had some difficult years behind me. But for me, everything that has happened is ultimately fine because it has made me the person I am today. I have written down my story because I want to give others courage and confidence and perhaps offer them a shortcut to a new normality.
Thank you very much for your openness and the interview!
More about Torsten Poggenphohl on his website www.torstenpoggenpohl.de
His book "einfach !ch. schwul.biplar. positive." (468 pages, 19.90 euros) has been published by Book On Demand.
