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Testimonials from those affected

Testimonials from those affected

At this point we collect testimonials from those affected.
We welcome further contributions in which those affected formulate their perception of their ADHD in their own words

1. Sincealwaysdifferent

I was a little boy when I first went to a daycare center in Leipzig in 1976. The strange environment, noise, many children, stress … the many stimuli were very demanding. Even after settling in, there was no closeness or security. The very moody “aunts”, the many different children with so many temperaments repelled me. In the smallest groups, concentrated play was possible, but mostly I perceived myself as a “foreign body”. After tea in the afternoon, I feverishly awaited the parents who would soon come through the lattice gate.

This continued even after I moved to another facility. Midday nap? Impossible! I lay quietly on the couch and registered every sound of the other children, on the street, the nearby railroad track, the educators in the hallway.
Then getting up, noise again, the clatter of plastic plates and cups, noisy educators. The emotional overload often brought hot tears.

My health condition made many spa stays necessary. Every farewell to Yugoslavia, the Baltic Sea or the Thuringian Forest made my little heart cramp. Over the many weeks I hardly found any friends and sadness settled on my child’s soul. Sleeping in halls or with many children in one room. The many noises and impressions at night hardly let me sleep. Tears of sadness at night and longing for parents and familiar home. Getting up, the noise in communal washrooms, noisy educators again. Here, too, I felt like a foreign body, feverishly awaiting news from my parents every day.

in 1980, I started school and felt more and more how I differed from other classmates. The unprejudiced enthusiasm of my classmates did not want to happen. Now and then changing playmates and essentially again the “view from the outside”.
Although imaginative play themes were also found - as the years before - the (too) attentive view of the environment remained.
Often headaches after intense concentration became part of everyday life, which my mother or grandmother knew how to alleviate through affectionate stroking. Headache pills didn’t really want to work and the pain often led to vomiting, which threatened to burst the skull.

Exam situations in front of the class often ended in emotional overload. Quivering voices, tears, even though the lecture or what was being asked was very well known. Self-esteem was at rock bottom. My classmates’ lack of understanding for such situations increased over the years. In sports, I was usually the last to be selected for a team, and in large groups, interaction and purposeful participation in game groups was hardly possible. Small projects that had to be completed alone or in the smallest groups turned into highlights.
Creatively designed crafts or technically sophisticated constructions aroused the teachers’ interest. I shone as a small inventor and skilled craftsman.

One of the customs of the time was target practice for the whole class. In the attic of the school building, concentration on the rear sight suddenly became very easy and so the interest of the agitating majors of the armed forces of that time (they visited the schools regularly) in me was quickly aroused. Two students of the year were asked to go to the professional shooting range and from then on they received official support. The outsider existence thus took an unexpected turn. But with the same, which shortly thereafter overturned the homeland, the time of confirmation and success was over. A new, different form of society brought fear and uncertainty to most people, rather curiosity to me.

By the end of school, focused concentration in class was rarely possible. Material that teachers did not convey vividly or enthusiastically through descriptions, blackboard pictures or experiments did not stick. Homework became an endless ordeal because parents misunderstood “not being able to understand” as “not wanting”.
Tutoring solved the problem to a large extent. Sensitive educators found ways to impart knowledge, but childlike play came up short. The subject matter often could not be “retrieved” from the overcrowded mind in written checks and was not present until the sheets were handed in or weeks later. The head was overflowing with thoughts. Like many little squirrels, they scurried through the huge crown of the thousand-year-old oak. If one squeaks, my attention is with him and the concentration of the actually demanded topic disappeared.

The nights became shorter due to my more and more reflective self-awareness and as a result of endless musings. Started books were always read secretly until far into the morning and so the concentration in school was missing. The many little injustices of my childhood and school life were experienced and suffered through very intensely. The sensation shaped more and more my behavior and I became more and more introverted. The brain stored immense amounts of information, in which according to emotional patterns but also other topics found their way in, but could rarely be called up specifically. Only the great helpfulness for the social environment was still the object of attention. Finally the final exams. Surprisingly good average. But further learning? No! No more school!

in 1989, the choice of profession for the 1990 apprenticeship year was pending, and the dissolution of a large GDR company put an abrupt end to the chosen specialty a short time later.
The second attempt in 1991 even allowed me to choose two training companies, but the “clinging” to the parental household again ensured the economically and prospectively worse variant. The training profession was learned only theoretically and finished with a good degree and enthusiastic examiners for the oral examination.

In fact, the head of the training company had long since discovered my potential and inclinations. The areas of application were completely off-topic and gave me, the high-flyer, room for development and far above-average performance.

1999. The beloved job wears more and more on the health and offered - because unskilled - no possibility for change. Out of the situation, the specialization and place of residence were changed. Very late now also a spatial “cutting the cord” from the parents’ house. The loneliness in the foreign country caused a first massive low, which found its end after two job changes rather coincidentally in the renewed joy in achievement.

A large company offered opportunities for advancement and I, the young adult, discovered my ability to have a positive motivating effect on those around me and to get over problems from childhood and school through strong concentration.
Learning can be fun. Suddenly, with conscious effort and a lot of enthusiasm, it was possible to do what had simply not been possible as a schoolchild. The “pull of success” took on a life of its own. Always at the head of the circle of colleagues, there was more and more confirmation, the concentration could be maintained almost endlessly with a lot of energy and directed towards one topic. The structures of the employer gave support, but the nature changed to the negative. The path “from Paul to Saul” became unbearable for the environment, the partnership threatened to break up. The offer of a company in Thuringia came just in time as an emergency brake. Resignation and relocation. The return to the homeland, once again a partnership broke up and emotionally the “sound barrier” had been reached at work. The change of character gnawed at my conscience.

2003 - New beginning.
The experiences of the last years suggested the foundation of an own company. Celebrated by the trade press, the innovative company launched into the market. The subject was thought through to the depths and refined again and again, but the important ability to self-direct and the resurgence of the social phobia of childhood days suggested an end.

2006 a new start. Again, another specialty inspired me, the now already matured young man. After bumpy first projects, the own niche was found. Again hyperfocus, euphoric enthusiasm, endless working days, missionary zeal. The brain spun higher and higher like a turbine, but it hardly slowed down for the evening. Short nights, hotel beds, a marathon of further education, endless brooding. The almost aggressive readiness to help, exuberant energy and too much emotionality also caused isolation when working in associations, which for a few years had offered a welcome part-time occupation. Only totally exhausted could I sleep contentedly in the evening.

2014 the breakdown. A sharp burning of the nerves, permanent restlessness and exhaustion paralyzed the entire everyday life. Hospital, therapy, medication, months later reintegration and everyday work, but “the wings of the eagle” no longer wanted to carry.
Emotional lows tore open black holes. The meaning of life seemed to disappear. Neurologists and psychologists were at a loss. Medications and therapies failed to have the desired effect.

2018
A childhood gift brought a surprising turn of events: observation!
Analysis of my son’s increasingly overwhelmed first grade and self-reflection with digging into my distant memories raised a suspicion.
DSM 4, ICD 10, S3… there were briefs of experienced doctors and professors that exactly reflected the problem areas of father and son. So far, emotional explosions caused unpleasant situations in border areas of “parental education”, which caused tears and a guilty conscience.
With newly emerging energy, the referral to the specialist was demanded by the family doctor and after endless tests over many months then the already suspected diagnosis. ADHD-I, predominantly inattentive with minimal hyperkinetic expression. Father and son received an identical diagnosis from different doctors.

Many striking sections and traits of the analyzed curriculum vitae were clearly assigned to typical symptoms of the disease by the specialists and many puzzles of the last more than 40 years were cleared up. A mixture between hyperactive drive and hypoactive dreaminess, coupled with emotional / sensory hypersensitivity and erratic curiosity have “shaped” the life so far.
With the therapies now beginning and the medication found after failures, or a very unusual medication, the return to everyday life succeeds. A whole new theme - “mindfulness” - now accompanies life. Until now, the restless brain was driven from one trigger to the next and could only be slowed down by exhaustion. But now it is to be actively controlled.
Conscious relaxation, a complete foreign word in previous lives, has become a part of my everyday life.

What remains is the sharp burning of the nerves.
Could it have been avoided by timely diagnosis and treatment?

The shameful emotional behavior towards the son, who still shows slight trauma in behavior today. Would the son, who was also affected, have been spared it if my syndrome had been diagnosed in time?

The many small attention-related traffic accidents and emotionally induced bad decisions that significantly diminished the capital earned so far.
Does ADHD even have an economic component?

My restless brain can still “not sit still”. But the knowledge of causes and targeted countermeasures now enable a largely “normal” life.

Ralph, 46 years

2. ADHD from the inside

When I was 7 years old, I was diagnosed with ADHD-I, simple attention deficit disorder without hyperactivity. At that time I was extremely disoriented and usually very fearful of other people. Every now and then I forgot to pay attention to the world around me and suddenly realized that everyone else was gone and I didn’t know where to go. Or I didn’t know if someone was coming to pick me up or what my job was. In situations like that, I was often very scared. I lived a lot in my own worlds.

I sometimes experience my ADHD-I today as different states in my head.
For example, I have times when I am extremely sensitive. I react sensitively to stimuli, especially sounds and heat. In general, I have the impression that the outside world is making too many requests of me that I have to process. This often happens after I have had to concentrate for a very long time (for example, even after long conversations) or when the Medikinet stops working.
In such moments, everything is often too much for me. I avoid crowds and noisy streets, I avoid being observed or communicating. I would prefer not to focus my attention on anything external, but the world often doesn’t play along. Maybe the chain falls off my bike, maybe a passerby speaks to me. In such moments I am extremely annoyed. I don’t want to react, I don’t want to make any decisions, I don’t want to plan; I capitulate and push the bicycle forward with the chain dragging instead of summoning up the little bit of concentration it takes to reattach the chain - because I don’t have that little bit of concentration right now or it’s too exhausting for me.
This happens to me more often: I give in to the situation instead of trying to fix something for a moment, because focusing attention is like an incredible effort. This can happen in discussions as well - I quickly back down or dodge (as a child, I hid in the closet when everything was too exhausting).

I know exhaustion very well. Everyday life can completely drain my energy reserves. This can happen very suddenly, or with such force that I feel I could crawl onto a landing and fall asleep there. Doing absolutely nothing for a short time helps quite a bit, or a lot of sleep.
I perceive very little continuity in my life: when I am exhausted, it feels like the final exhaustion - that’s how it is, that’s how it will be forever now. When I’m just full of energy, it feels equally final - what I’m experiencing at that moment is absolute, everything else doesn’t exist. I interpret momentary events as “this will stay like this forever now.” I don’t seem to include the context of the situation - i.e., what happened before it - in my prediction and understanding of what happened.
This is also the case with my self-image: I always construct it anew, take small time intervals including the now as the data basis for my model. If I behave differently for some reason, it confuses me a lot. For a while I also felt like a different person every day, had no continuous self-image.

When I’m not exhausted, I’m often the opposite: driven and highly motivated, full of ideas that swirl around inside me, quickly appearing and disappearing.
I find small talk rather boring and exhausting, or I’m unsure what to say, so I sometimes ask people what they’re thinking. Sometimes I get to hear that they’re not thinking anything right now.
I believe them, but I can’t sympathize. I am also a little envious.
My head is always active, I am constantly in thought. Even when I should be enjoying something - trivial thoughts occupy my attention. Enjoyment can therefore be incredibly difficult and even really exhausting. I have to concentrate for it, direct my attention to the object of enjoyment, otherwise there is no enjoyment. By enjoyment I mean, for example, a nice conversation, delicious food, my favorite song, a sunset, a beautiful touch, art, sunshine, visiting my old home, flowers by the wayside, when someone confides in me for the first time. It can be very stressful not to be able to really enjoy all these moments because of concentration problems.
My attention is always taken up by one particular topic, which I subjectively estimate to be about 70-80% of my waking time. Therapists have interpreted this as excessive brooding or compulsive ruminating, and sometimes it was, but it is not only negative topics that I think about. For a while it was environmental protection, for example. I thought about environmental protection non-stop, everything I experienced immediately got the context: and how sustainable is that? Even earlier I thought excessively about cats (I have known the phenomenon for a long time). Currently I think excessively about neurodiversity. This sometimes annoys me a lot! I would so like to turn off these thoughts one day. Like an inner chatter that I have to listen to whether I want to or not, and that can literally clog up my attention.
I meditate regularly. Meditation is extremely exhausting for me. I only manage to experience a kind of inner stillness for seconds at a time and concentrate on my breath. Otherwise, meditation is a very valuable training for me: I observe exactly how my mind behaves, like a psychologist studying his test subjects behind mirrored glass. I learn to put distance between myself and thoughts and feelings. By repeatedly mustering the strength to shift my attention away from something and toward something, I am training this skill. And I also notice that this training helps me in everyday situations, especially for emotion regulation.

Since my attention is occupied by loud thoughts instead of being directed outward, it is also quite logical that I do not notice so much - for example, the content of conversations or who is in which relationship with whom. I feel chronically disinformed. I never seem to be fully there, I’m so lost in thought that I’m often not really aware of my surroundings. It has happened to me that while riding my bike I suddenly thought: Where am I, and how did I get here?

My ADHD-I also shows up in what is called executive dysfunction. This affects quite a lot of cognitive skills. Among other things, simply not being able to start things, or starting things and then not being able to finish them - you have great plans, but in the end, only with immense effort does anything get done. When I observe other people who seem to “just do it” effortlessly, I often don’t understand how they do it. Like most AD(H)Sers, I had this experience quite often. Unfortunately, at first I didn’t understand what my being different consisted of and sometimes interpreted my difficulties to mean that I was stupid and a misfit. To deal with ADHD-I helped.
Today, I often don’t come across as the typical crazy ADHDer, because I have my everyday life under control quite well. Order and structure give me a sense of security. However, it takes a lot of effort and I often feel like I’m constantly fighting my inner chaos. I constantly come up with systems to organize myself, but then often don’t follow them. I sometimes have the impression that I need relatively more time and energy for such things than others, just to keep myself at an acceptable level of organization and order. This energy is then sometimes lacking for phone calls and meetings. Secretly, I’m often afraid that my order will break down or that I’ll forget to do something really important, like pay a bill or something. Or that I won’t notice something very important, that you have to submit something for university or register somewhere or something. Sometimes I’m just so scared in situations that are actually safe.

What I like about myself is that I can recover very quickly from mood lows and severe exhaustion. When I’ve had an exhaustion-induced mood lull where nothing worked at all, it’s usually okay again the next day and I’m full of ideas and optimism again. My mood swings are often severe and often I don’t know at all why I’m feeling so strange or what I’m feeling at all. I find it confusing, but I also know that “the spook will be over soon”.
Also typical of ADHD-I: I’m extremely enthusiastic about a lot of things and would love to lead two or three lives in parallel in order to implement all my project ideas. Almost every lecture excites me, I have an extremely wide range of interests. I would love to get involved in all kinds of places and have to hold back a lot because I already have so many projects started. I am also very idealistic and, when I have the strength, I get involved in many places for things that are important to me, because I also feel my share of responsibility. Over time, with therapeutic help and a lot of overcoming, I have managed to overcome my social anxiety relatively well. I know that these are common in ADHD-I, and often I find them more stressful than the ADHD-I itself.
I get along much better with people who are weird or have mental quirks. Some people say I’m eccentric or weird. That’s probably because I sometimes get very crazy ideas and can be very nonconformist. This sometimes means that I get offended or feel isolated, but basically it’s also a quality that I like.

Mara, 22 years