In the analysis of the interviews four themes and eleven sub-themes were identified. The four themes were (1) I find it hard to regulate what I take in and what comes out (2) I’ve really struggled but it does not seem to work (3) It impacts my vitality and my relationships (4) I can be successful and things are getting better (see Table 3). All themes and sub-themes are presented and illustrated with quotes from the material (the number of the respondent is indicated with #).
Table 3
Thematic ’map’ of the analysis
Theme | Sub-theme |
An inner chaos and blankness | Inner chaos |
| Blankness |
| I am either off or on |
A lot of effort is required from me | My way of being works against me |
| I get drained and exhausted |
It impacts my vitality and my relationships | I am tiresome to others, others are tiresome to me |
| I resign and blame myself |
I can be successful and things are getting better | When I am vigorous and creative |
| When I use the inner stress or strong emotions as motivation |
| With time for recovery, good strategies and the help of medicine |
| Certain symptoms have decreased over time |
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I find it hard to regulate what I take in and what comes out
Two different sub-themes emerge from the interviews revolving around how the adolescents assimilate and process information, what is happening in their minds, and their ability to initiate and regulate their actions. To capture the two sub-themes a model was created (see Fig. 1) in which the sensory impressions that individuals take in are referred to as input, and their actions as output. In some cases both of these two ways of working were recounted by the same individuals. The difficulties in regulating level of input and output can result in the experience of being either off or on.
Inner chaos
In the sub-theme inner chaos adolescents portray what is happening in their minds both as a jumble of impressions, and as thoughts rushing around. Another aspect of the internal turmoil is dealing with intense emotional reactions.
“So it becomes... just that not being able to sort things in the right order, it very easily causes chaos…It simply becomes chaos in the brain.” #16
In inner chaos input is characterised by an overloading amount of impressions, with a limited ability to filter these impressions. This kind of constant “noise” makes it difficult to distinguish the signals you want to pay attention to.
“Yes, that’s right, it's difficult to control your... what's it called... concentration like, now I'm going to focus on this, but at the same time, you take in so much else as well, like, you like... if you say that someone who doesn't have adhd can kind of filter so they’re just: okay, now I concentrate on this, like, what's on the board, and what the teacher says, while someone with adhd can... doesn't have this filter like so they kind of see everything…” #13
In inner chaos output refers to behaviours that the adolescents themselves view as ill considered and "too much”. Unintentionally, actions "slip out" through the holes of the permeable filter between themselves and the environment.
“Well, you say something stupid that you don't even mean, and you don't even know that you've said, and then people can get upset.” #20
Blankness
In the sub-theme inner blankness the adolescents talk about how their mind is going blank, accompanied by an inability to make content stick, or to access content that they know should be there:
“If the teacher asks a question and someone in the class is supposed to raise their hand and answer then… and I may know what it is, but I can’t… I have it on the tip of my tongue but it never comes out because I do not know how to say it. ” #14
Descriptions about input refer to how the signal never gets through the filter. There is a difficulty of directing attention, taking in the right signal and being able to process information as desired.
“… to have to do something according to instructions that I heard kind of a minute ago it's so super stressful, because I am… it feels like I kind of… I can not focus sometimes because it's like this “bah, shit, I just can’t "…"#12
It is like the inner intent gets stuck on the way, with difficulties initiating and completing actions, leading to “to little” output. This difficulty appears to sometimes be related to an inability to prioritize, sometimes to the lack of energy and sometimes to an inner resistance.
”The thing that affects me most in everyday life is that I have difficulty getting things started. That's probably the biggest problem that I think is bad.” #4
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I am either off or on
Related to the problems regulating the level of input and output is a description of being either off or on. There is a shortage of flexible customized variability regarding the intensity of different internal and external responses. Instead, both overreactions and underreactions are common, with regards to regulation of attention, emotions, energy levels or stress.
"My difficulties, it's probably those typical ADHD things, that my mood is up and down all the time, there is no middle ground, not at all. It's always from one to one hundred, all the time and it's either or. It is probably my biggest problem - that I can't handle that." #8
A characteristic that some experience as positive and that they think distinguishes them from others is a sudden ability to concentrate very well in certain situations at times when they find something interesting or enjoyable. When this hyperfocus is on, almost nothing can disturb them. It can be conceptualised as a sudden possibility to close the overly permeable filter, shut out the “impression noise” and deliberately canalise the energy. Hyperfocus stands in stark contrast to the first two sub-themes presented, for once something is functioning effortlessly.
"Just this, not being able to really focus on one and the same thing for long periods of time, or not having interest in anything, and just simply not listening. And then, when you finally find something that you like, that becomes… then you focus on that one hundred per cent." #15
On the other hand, hyperfocus can turn from something positive to something negative, as it sometimes leads to being completely shut off from the outside world and even forgetting to both eat and sleep. The filter is closed and therefore it becomes difficult to pay attention to new signals and switch attention to them.
I’ve really struggled but it does not seem to work
A central theme across interviews is an inherent exertion and mental strain linked to living with ADHD. The adolescents struggle to get their everyday life together, both at school and at home. Their undertakings are often delineated as both energy-intensive and fruitless.
My way of being works against me
The described way of functioning, with difficulties in regulating information intake, thought processes and behavior, is perceived by the adolescents as stressful, strenuous, and impairing.
"I don’t care, I do not have the energy. Like that, because I kind of have had no stamina. I have really struggled, but it does not seem to work.” #18
A lot of things require more effort to carry out because of an inner resistance containing an emotional aversion, a mental state opposite to motivation. Some interviews involve a description of doing almost anything to avoid or postpone doing something aversive, like homework, and they evaluate themselves negatively in relation to others.
“No, I usually, I kind of decided to do things with structure beforehand. I've sort of decided that I can't sit down at the computer or the TV until I have done it. But then instead I just sit and do nothing. Or subconsciously, for example, when I have schoolwork to do, I clean my room instead, which I would never do otherwise. It's kind of like I do anything else.” #4
Another aspect described as demanding by some, adding to the experience of increased effort and loss of control, is a difficulty in being flexible. Being able to carry out things that are unforeseen, unplanned, and not part of the usual routines is described as challenging.
”When things goes beyond my planning or something like that. Then I’ll become super stressed and destroy everything around me, relationships or mirrors - just everything.” #8
Several of the adolescents find it difficult to describe what it is like living with ADHD. The lived experience is difficult to capture and put into words, because they know of nothing else. They find it hard to distinguish traits of ADHD from who they perceive themselves to be.
”I don't know, it's hard to say. But precisely this, that I kind of… altogether… it feels like it is a part of me. Who I am.” #4
I get stressed out, anxious and exhausted
The adolescents frequently mention stress and many had a hard time distinguishing the experience of stress from symptoms of ADHD. As a result of the stress and mental strain in everyday life the adolescents express that they become anxious or drained of energy.
"I do not feel well, because I get so tired of just being, so will I just have to rest now for one day." #7
Anxiety is often mentioned together with stress, sometimes as either one triggering the other, sometimes as two facets of the same experience.
”Usually when I get very stressed, I get a lot of anxiety, which means I can't relax and I can't breathe”#15
Going to school for a whole day is described by most as very strenuous and several young people also say that they miss a part of life, as the energy is already consumed after the school day. There is also a desire to be as perseverant as other young people.
“No, I really did not understand why … how the others could do everything. They were superheroes in my eyes. How can they like go to school, exercise, kind of like play football and then meet friends on top off that. I went to school, then I kind of caved in when I got home.” #16
It impacts my vitality and my relationships
Different consequences of ADHD are described by the adolescents. Inner stress and exhaustion has already been mentioned. In the material there are also repeated descriptions of a relational consequences where the adolescents are disturbing to and disturbed by others. With the high strain and repeated failures come self-accusations and a tendency of giving up.
I am tiresome to others, others are tiresome to me
Interpersonal consequences of ADHD are disclosed in several of the interviews. The interviews recount how ADHD symptoms and related behaviour can be perceived as tiresome to the environment, causing others to be irritated. Interrupting others, talking excessively and making comments that others are offended by, are some of the examples mentioned. This involves an experience of being a nuisance to teachers and other adults because of too much output.
"I have always, throughout my schooling, had problems with teachers and so on. Because teachers don't like me and that is natural, it's natural that a teacher flips out on a student who sits and talks straight out every lesson, and who runs around like a headless chicken". #2
Another phenomenon is that others may be disturbed or displeased because of a blankness or lack of output, for instance when the adolescents are not doing what is expected of them. Others can interpret this behaviour as negligence. Here the adolescents bring up examples of not doing their part in group assignments, not replying to text messages, and not listening when spoken to. The inability to direct attention and retrieve information can also lead to misunderstandings, a failure to take note of social signals and the risk of being perceived as aloof. Furthermore, deficiencies in time perception, manifested as not showing up in time, can cause annoyance.
“… I rarely have the energy to write with people, for when I have the time to do it, then I'm too tired. ... so there are some people that I haven't spoken to in like a month, who normally spend time with. And they just go "but why haven't you answered" and I just say "ehh, sorry". #18
At the same time the adolescents describe how other people can be tiresome to them. They describe an easily triggered irritability and anger and a tendency of overreacting to small disruptions or misunderstandings. This can in itself comprise a strain on relationships.
”Since I'm more easily affected by general impressions, my friends tend to get... well, they usually get a taste of my irritation and my anger. So I always apologize to them and say that it's not them I'm angry with.” #15
As both life in general and social interactions can be more tiring for these adolescents, they sometimes do not find the energy to socialize with peers. This in turn can lead friends to misinterpret their intentions, lose patience, and withdraw.
I resign and blame myself
A sense of failure and resignation emerges in the stories together with self-blame. Feelings of helpnessness, a lack of control and sometimes even devastation. Some describe easily getting feelings of guilt after accidently doing something wrong. Others recount how stressful circumstancies can be so overwhelming it leads them to give up and do nothing.
”When I become so stressed that I can’t do anything, then I lie down and stop caring and I feel like I’m a failure.” #7
Helplessness and perceived failure leads to feelings of entrapment and resignation. Taken together this downward spiral can induce low mood.
”…So I get more and more depressed, because I feel that "now I can't manage to do anything". #19
I can be successful and things are getting better
ADHD is not only described as a challenge, but also as an asset. It is seen as a source of creativity, vitality and motivation. And the challenges it poses can be overcome.
When I am vigorous and creative
A special kind of energy, motivation or drive is recurrently expressed by the adolescents as something that both makes them and their lives more interesting. We gain insight into an elate state of mind.
“Well there are many positive things. There are not as many advantages as there are disadvantages, but for instance that you feel more emotions is a... for me it can be a drive, that like... you... you feel like a... if you feel motivated or happy then like... then it's really like there's a fire burning inside you in some way.” #12
Several of the participants describe that they often feel extremes in emotional experiences, both positive and negative. Some find it positive to have strong emotions, because they give life extra spice.
"When I really do something or feel something, I really do it with all of my heart. So, I'm not half in love, for example, or I'm not half happy, it is not like that. No, then I really feel very well or am very much in love with someone.” #8
A related positive aspect of ADHD seems be creativity as in having many ideas and arriving at unconventional conclusions.
"Yes, I am very creative. And so I get new ideas all the time. Although half of them are completely idiotic, I constantly get a lot of good ideas. So I have a lot of energy and when I put it into things I should do or will do, it works out great." #5
When I use the inner stress or strong emotions as motivation
When the adolescents talk about hyperfocus or a special kind of energy it is conveyed with positive connotations. In some instances, they describe approaches they use to put themselves in this state. A generic strategy of using emotions as a driving force to accomplish something emerges. They portray an interplay between motivation and time pressure, where on-going internal stress can be transformed into motivation and the production of output if time for a task becomes scarce. Procrastination becomes a strategy, to create sufficient motivation and a good result is attributed to the internal pressure they managed to create.
"I mean I do care, if I had a choice I would do it, finish it. But the thing is, if I had finished it in time, it probably wouldn't have turned out as good. So I'd rather hand it in late and do it well, than hand something in on time that I'm not completely happy with. Because the stress helps me to do better. Since then I feel that "now I really have to do this". When it's almost a life-or-death situation, then I do it." #5
Also, determination to succeed can have evolved from emotions stemming from adversity and hardship.
”And there are things like when I was bullied, when I was younger, so instead of just saying "okay, now it's like this" and losing hope in everything, I used my anger that I had towards them and like transformed it into this kind of motivation, that like this "I'll be better than the kids at my school", "I'll... be better" like that” #12
With time for recovery, good strategies and the help of medicine
Many view the home as a haven for recovery where they are met with lower demands, an understanding and a willingness to help and solve problems.
”After all, I have my room and my bed where I spend almost all of my time. It's like my safe place. So yes... then I have my parents who... especially my mother, she realizes quite quickly when something is wrong, so she can usually help quite a lot.” #15
The need for recovery and breaks is also highlighted by some in other situations such as during the school day and during free time.
Some of the adolescents talk about strategies they have evolved to have things work better. To ruminate less, to go ahead and do things irrespective of what you think or feel are strategies mentioned. Also, to be aware of your way of functioning and of what is really important to you.
”... like you have to be aware of your values, how to do things, what you kind of want to achieve, because otherwise you will let your impulses rule, and then nothing will work out, kind of.” #12
A recurring topic in the interviews is how medical treatment facilitates life and everyday functioning.
"I notice a big contrast between what I am like with medicine and without medicine, it really is... my medicine it’s like this... everything works, it really works"#12
Occasionally negative effects of the medication are mentioned such as increased irritability and change of weight.
Certain symptoms have decreased over time
Furthermore, an experience is noted that certain typical ADHD symptoms have decreased or changed over the years. For example, hyperactivity may have decreased.
"It was already noticeable when I was younger, with the concentration and sometimes I had great difficulty sitting still, but it was mostly when I was younger. Now it is mostly just the concentration that is the problem. (...)” #14
Some have noted that emotion regulation skills and impulse control have improved over time.
”I got it when I was five or six so I've had it for quite a while now. It was probably more visible on me when I was younger. I was very moody, edgy, felt, well it was more that people commented a lot and I guess I didn't feel too good about that.” #9