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Testimonials from those affected

Testimonials from those affected

This is where we collect testimonials from those affected.
We look forward to receiving further contributions in which those affected formulate their perception of their ADHD in their own words.

1. Always different

Leipzig 1976: I came to a nursery for the first time as a little boy. The unfamiliar surroundings, noise, lots of children, stress … the many stimuli were very demanding. Even after settling in, there was no feeling of closeness or security. The very moody “aunts”, the many different children with so many different temperaments put me off. Concentrated play was possible in very small groups, but most of the time I felt like a “foreign body”. After tea in the afternoon, I eagerly awaited the parents who would soon be coming through the gate.

This continued even after moving to another facility. Nap time? Impossible! I lay quietly on the cot and registered every sound of the other children, on the street, the nearby railroad line, the teachers in the corridor.
Then getting up, noise again, the clattering of plastic plates and cups, loud teachers. The emotional overload often brought hot tears.

My health made many stays at health resorts necessary. Every farewell to Yugoslavia, the Baltic Sea or the Thuringian Forest made my little heart ache. Over the many weeks, I hardly made any friends and sadness settled on my childlike soul. Sleeping in halls or with lots of children in one room. The many noises and impressions at night made it hard for me to sleep. At night, tears of sadness and longing for my parents and my familiar home. Getting up, the noise in communal washrooms, loud teachers again. Here, too, I felt like a foreign body, waiting every day for news from my parents.

i started school in 1980 and felt more and more how I differed from my classmates. The unbiased enthusiasm of my classmates did not want to materialize. Changing playmates from time to time and essentially the “view from the outside” again.
As in previous years, imaginative play themes were found, but the (overly) attentive view of the environment remained.
After intense concentration, headaches often became part of everyday life, which my mother or grandmother knew how to alleviate with loving strokes. Headache pills didn’t really work and the pain often led to vomiting, which threatened to burst my skull.

Exam situations in front of the class often ended in emotional overload. A trembling voice, tears, even though the presentation or the question was 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 picked for a team and in large groups, interaction and targeted participation in play groups was hardly possible. Small projects that had to be completed alone or in very small groups turned into highlights.
Creatively designed crafts or technically sophisticated constructions aroused the teachers’ interest. I excelled as a small inventor and skilled craftsman.

One of the customs of the time was shooting practice for the whole class. In the attic of the school building, it suddenly became very easy to concentrate on the rear sight and front sight and so the interest of the agitating majors of the armed forces at the time (they regularly visited the schools) was quickly aroused in me. Two pupils from the year were asked to go to the professional shooting range and from then on received official support. My outsider existence thus took an unexpected turn. However, the time of affirmation and success was over when the same thing happened to the home country a short time later. A new, different form of society brought fear and uncertainty to most people, but curiosity to me.

Until the end of my school years, targeted concentration in lessons was rarely possible. Material that teachers did not convey vividly or enthusiastically through descriptions, blackboard pictures or experiments was not retained. Homework turned into an endless ordeal, as parents misunderstood “not being able to understand” as “not wanting to”.
Tutoring solved the problem to a large extent. Empathetic teachers found ways to impart knowledge, but children’s play was neglected. The subject matter could often not be “recalled” from the overcrowded head in written tests and was only present after the sheets were handed in or weeks later. The head was overflowing with thoughts. Like so many little squirrels, they scurried through the huge crown of the thousand-year-old oak tree. If one of them squeaked, my attention was drawn to it and my concentration disappeared from the topic that was actually required.

The nights became shorter due to my increasingly reflective self-awareness and, as a result, endless musings. Books I had started were always read secretly well into the morning and so I couldn’t concentrate at school. The many small injustices of my childhood and school life were experienced and endured very intensely. This feeling shaped my behavior more and more and I became more and more introverted. The brain stored immense amounts of information, into which other topics also found their way according to emotional patterns, but could rarely be retrieved in a targeted manner. Only the great willingness to help the social environment was still the subject of attention. Finally the final exams. Surprisingly good mediocrity. But keep studying? No! No more school!

in 1989, he had to choose a profession for the 1990 apprenticeship year and the dissolution of a large GDR company put an abrupt end to his chosen specialization shortly afterwards.
The second attempt in 1991 even gave me the choice of two training companies, but the “clinging” to the parental household meant that I chose the economically and prospectively worse option. The apprenticeship was only learned theoretically and ended with a good degree and enthusiastic examiners for the oral examination.

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

1999. The job she loved was increasingly draining her health and - because it was unskilled - offered no opportunity for change. The situation led to a change in specialization and place of residence. Very late now also a spatial “cutting off” from the parental home. Loneliness in a foreign country caused a first massive low, which ended rather accidentally after two job changes in the renewed joy of performance.

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 overcome the problems of childhood and school through strong concentration.
Learning can be fun. Suddenly, with conscious effort and a lot of enthusiasm, it was possible to do things that simply wouldn’t work as a schoolchild. The “pull of success” took on a life of its own. Always at the top of the peer group, there was more and more confirmation, concentration could be maintained almost endlessly with a lot of energy and focused on one topic. The employer’s structures provided support, but the nature changed for the worse. The path “from Paul to Saul” became unbearable for those around him and the partnership threatened to break down. The offer from a company in Thuringia came just in time as an emergency brake. Resignation and relocation. The return home, once again a partnership broke up and emotionally the “sound barrier” was reached at work. The change of character gnawed at my conscience.

2003 - A new beginning.
The experiences of the last few years suggested the founding of their own company. Celebrated by the trade press, the innovative company launched onto the market. The topic was thought through in depth and refined again and again, but the important ability to control oneself and the resurgence of the social phobia of the childhood days brought it to an end.

a new start in 2006. Yet another specialist field inspired me, the now mature young man. After bumpy first projects, I found my own niche. Hyperfocus again, euphoric enthusiasm, endless working days, missionary zeal. The brain spun higher and higher like a turbine, but it hardly slowed down towards the evening. Short nights, hotel beds, a training marathon, endless brooding. The almost aggressive willingness to help, exuberant energy and excessive emotionality also led to isolation when working in associations, which for a few years had offered a welcome part-time occupation. I could only sleep contentedly in the evening when I was totally exhausted.

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

2018
A gift from childhood brought a surprising turnaround: observation!
Analyzing my son’s increasingly overwhelmed first grade and self-reflection with digging into my distant memories aroused a suspicion.
DSM 4, ICD 10, S3… there were briefs from experienced doctors and professors that precisely reflected the problem areas of father and son. Previously, emotional explosions caused unpleasant situations in borderline areas of “parental education”, which triggered tears and a guilty conscience.
With newfound energy, the GP requested a referral to a specialist and, after endless tests over many months, the diagnosis was made. ADHD-I, predominantly inattentive with minimal hyperkinetic manifestations. 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 mysteries of the last 40 years were cleared up. A mixture of hyperactive drive and hypoactive dreaminess, coupled with emotional / sensory hypersensitivity and volatile curiosity have “shaped” the life to date.
With the therapies now beginning and the medication found after failures, or a very unusual medication, the return to everyday life is successful. A completely new topic - “mindfulness” - now accompanies life. Previously, the restless brain was driven from one trigger to the next and could only be slowed down by exhaustion. But now it needs to be actively controlled.
Conscious relaxation, a completely foreign word in my previous life, has become part of my everyday life.

What remains is the sharp burning sensation.
Could it have been prevented by timely diagnosis and treatment?

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

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

My restless brain still can’t “sit still”. However, the knowledge of the causes and targeted countermeasures now enable me to lead a largely “normal” life.

Ralph, 46 years old

2. ADHD from the inside

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

Today, I sometimes experience my ADHD-I 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 demands on me that I have to deal with. This often happens after I have had to concentrate for a very long time (e.g. after long conversations) or when the Medikinet stops working.
In moments like these, everything is often too much for me. I avoid crowds and noisy streets, I avoid being watched or communicating. I would prefer not to focus my attention on anything outside, but the world often doesn’t play along. Maybe the chain falls off my bike, maybe a passer-by speaks to me. In moments like these, I’m 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 bike forward with the chain dragging instead of putting in 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 fixing something for a moment because focusing my attention is an incredible effort. This can also happen in discussions - I quickly give in or give way (as a child, I hid in the closet when everything was too stressful).

I know exhaustion very well. Everyday life can completely drain my energy reserves. This can happen suddenly or with such force that I feel like crawling onto a landing and falling asleep. Doing absolutely nothing for a short time then helps quite well, or a lot of sleep.
I perceive very little continuity in my life: when I’m exhausted, it feels like the final exhaustion - that’s the way it is, it will stay that way forever. When I am full of energy, it feels just as final - what I am experiencing at that moment is absolute, everything else does not exist. I interpret momentary events as “this is how it will stay forever”. I don’t seem to include the context of the situation - i.e. what happened before - in my prediction and understanding of what is happening.
It’s the same with my self-image: I am constantly constructing it anew, taking small time intervals, including the present, 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 and didn’t have a consistent self-image.

When I’m not exhausted, I’m often the opposite: driven and highly motivated, full of ideas that jumble around inside me, appearing and disappearing quickly.
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’m told that they’re not thinking anything at the moment.
I believe them, but I can’t empathize with them. I’m also a little envious.
My mind is always active, I am constantly thinking. 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 and focus my attention on 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 being able to really enjoy all these moments because of concentration problems.
My attention is always taken up by a particular topic, which I subjectively estimate I think about 70-80% of my waking hours. Therapists have interpreted this as excessive brooding or obsessive thinking, and sometimes it was, but it’s not just negative topics that I think about. For example, for a while it was environmental protection. I thought about environmental protection non-stop, everything I experienced was immediately put into context: and how sustainable is that? I used to think excessively about cats (I’ve known this phenomenon for a long time). At the moment, I think excessively about neurodiversity. Sometimes that really annoys me! I would love to stop these thoughts for once. 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 a few seconds at a time and concentrate on my breathing. Otherwise, meditation is 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 distance myself from my thoughts and feelings. By repeatedly summoning the strength to direct my attention away from something and towards something, I train this ability. And I also notice that this training helps me in everyday situations, especially when it comes to regulating my emotions.

As my attention is occupied by thoughts instead of being directed outwards, it is also quite logical that I don’t notice so much - for example, the content of conversations or who is in what relationship with whom. I feel chronically disinformed. I never seem to be fully present, I’m so lost in thought that I often don’t really notice my surroundings. It has already happened to me that I suddenly thought while cycling: Where am I and how did I get here?

My ADHD-I also manifests itself in what is known as executive dysfunction. This affects many cognitive abilities. Among other things, simply not being able to start things or starting things and then not finishing them - you have big plans, but in the end you only achieve something with immense effort. When I watch other people who seem to “just do it” effortlessly, I often don’t understand how they do it. Like most people with ADHD, I had this experience quite often. Unfortunately, at first I didn’t understand what my difference was and sometimes interpreted my difficulties to mean that I was stupid and a misconstruction. Getting to grips with ADHD-I helped.
Today, I often don’t seem like the typical crazy ADDer because I have my everyday life quite well under control. 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 against my inner chaos. I’m constantly coming up with systems that I can use to organize myself, but then I often don’t follow them. I sometimes have the impression that I need proportionally 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. I’m often secretly afraid that my order will collapse or that I’ll forget to do something really important, like pay a bill or something like that. Or that I won’t notice something really important, that I 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 dips and severe exhaustion. If I’ve had an exhaustion-induced low mood where nothing worked, I’m usually okay again the next day and I’m full of ideas and optimism again. My mood swings are often severe and I often don’t know 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 soon be over”.
Also typical of ADHD-I: I’m extremely enthusiastic about a lot of things and would love to lead two or three lives at the same time in order to realize all my project ideas. Almost every lecture excites me, I have an extremely wide range of interests. I would like to get involved in all sorts of things and have to hold back a lot because I already have so many projects that I have started. I am also very idealistic and, when I have the strength, I get involved in many 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 I often find them more stressful than ADHD-I itself.
I get on much better with people who are strange or have psychological quirks. Some people say I’m eccentric or weird. That’s probably because I sometimes come up with very crazy ideas and can be very non-conformist. Sometimes that means I offend people or feel isolated, but it’s also a quality that I like.

Mara, 22 years old

3. One affected person reports a very fitting statement from a therapist

A very good therapist in psychoeducation always told us:

“It is definitely not the aim that you are permanently treated with medication.
But ADHD medications are some of the most effective psychiatric medications available and also have some of the lowest side effects.
And you have now spent years building many highways in your brain through what you have learned, which allows you to perform automated behaviors.
And they will not want to leave these highways voluntarily or in the long term, because the road around them is very hard.
Therefore, you must slowly begin to change these highways through psychoeducation, psychotherapy and reflection on these behavioral patterns.
Whether you want to rebuild the highways with a shovel and bucket or with excavators and asphalting machines is up to you.
But the medication for ADHD is the same as the diggers and the asphalt machines.”

And so far, all I can say is: she’s right.