During analysis it became clear that we needed to understand our participants’ experiences of living with ADHD, before we could understand the role that music and music therapy have in such experiences. Thus, we organize our findings into two domains: (1) experiences of ADHD, and (2) experiences of music and music therapy; where the first domain provides a foundation for contextualizing the second. A synthesized description of the participants’ experiences is included within each theme, organized by sub-theme and substantiated with quotations from the participants. Where possible, we have retained participants’ wording in sub-themes and themes, albeit as translations from Norwegian. We also distinguish between experiences described by one, several, all or no participants.
Experiences of ADHD
Living with ADHD is experienced by participants to varying degrees as: being steered by energy, being pressured to be like others, giving rise to self-medicating, and requiring a life-long process of coping.
Steered by energy
Several participants describe a tight connection between body sensations, feelings and thoughts and that their whole experience is “steered by energy.” Emotions are expressed through the body, which then impacts thoughts. Participant B describes first experiencing restlessness as manifested in the body, and thereafter being flooded with thoughts, but has the ability to regain balance by listening to trance music. Experiencing a bodily manifestation of emotion was present in childhood for Participant H:
When I was a boy, I ran all the time. You don’t manage to express depression, anxiety, restlessness, or anything at all. You say maybe you have a bit of a stomachache. You don’t have words for it. (H)
The restlessness that one experiences is coupled with challenges in concentration. Participants describe “taking in so many unnecessary things”, trying to process everything simultaneously and in so doing, being at risk of missing something important (B).
To concentrate on what one should concentrate on, when you need to concentrate, instead of your head constantly spinning and going on all sorts of things that it should not do there and then. Concentration, restlessness, nervosity, they are quite tiring to live with… (G).
Participant G acknowledges that theyFootnote 5 have learned to live with this challenge in focusing attention, but it comes with a cost. Difficulties with concentration and following-through have also led some participants to struggle in making it through school and/or holding jobs, “It has been a struggle the whole way. You begin many different things, but I never manage to complete any of them” (G).
For some, the experience of restlessness is tied to feelings of self-worth,
It can give low self-esteem and you can get anxiety, and somehow miss a little belief in yourself. And lots of impulsivity, that makes things quite difficult. (E)
while others experience restlessness and aggressivity (D). Feelings of frustration often led to giving up, “…if frustrations arise or something like that, then it is much easier to give up on those things” (D). Some participants (A, C, G) felt a sense of clarity when they were diagnosed with ADHD, as Participant G describes, “all the signs and all I had struggled with my whole life, and why I struggled with it.”
Pressured to be like others
Four participants realized early in life that they were not like others of their age. Other people pointed out that they could not sit still and did not behave “properly” (C, E, F).
And the same in elementary school, it was just misery and yelling and howling and screaming that you did not manage to behave properly. [I] was a bit impulsive also. (C)
For Participant F, those impressions still “hang there” today:
ADHD, it’s like you’re not like everyone else, right, sitting and drinking coffee. You are a bit too active, you have to do things…I can’t last long relaxing and being social for too long, I think it’s tiring. (F)
One could feel fine while alone, but then be forced to put “brakes on” oneself when in social settings:
…I have put so many brakes on myself, and it is not right to put so many brakes on yourself, but it becomes a part of the whole. And it’s tiring. And it becomes a bad habit in the end, because you have to be like everyone else. (F)
Participant F experiences this self-censure as being placed in a “pen” since one is forced to behave differently than how one really is. A challenge arises when participants have to do things, such as go to school or learn things, on the premises of those who do not have ADHD:
…then I struggle with that setting…but to take a practical job in construction, or organize other things, I have no problem with that. I do not think there was a problem in the Stone Age with ADHD. (H)
A reason for self-medicating
Two participants (G, H) described turning to substance use as a way to cope with feelings of restlessness in their everyday lives.
So when I started taking drugs and such, it was just like, you finally got peace in a way, you know? Finally got your mind to relax, finally got your body to calm down, kind of. It was just that you always searched for something that was missing, you know. Just as if something fell into place then. (G)
Participant D experienced that their tendency towards aggression was lessened when using marijuana. This self-medicating approach that worked effectively for reducing aggression was then the source of Participant D getting “burned” by a system that punishes such activity. For another participant it was hash, alcohol and amphetamines that brought a sense of balance amid inner restlessness, but also undesirable legal consequences:
…but if one is convicted many times for taking that medicine, the closest you can come to treatment for your diagnosis, to alleviate the symptoms, to be able to do something artistically creative, it stings a little. (H)
Since substances enabled some participants to experience a feeling of “peace,” of relaxing and unwinding, it was easy to start using drugs more intensely “than one should” (G).
A lifelong process of coping
As participants get older, their experience of ADHD changes: outwardly apparent restlessness, hyperactivity and in some cases, aggression has transformed to inner restlessness.
I was much more outwardly aggressive before, much sharper on the edges, and now I notice that it has become much more on the inside, in a way. Now it’s a little more inner restlessness. (D)
An experience of “inward chaos” continues for Participant C, who also experiences ongoing problems with impulse control. For Participant C, ADHD medicine has helped with several aspects, but the inner restlessness continues.
Several participants express a bitterness over not having received an ADHD diagnosis or accompanying support earlier in life. They wonder how things could have been different:
So a little bitter that this was not caught when I was little and that I could have gotten help and maybe been medicated then, too. And gladly would have avoided having the bad start to life that I had. (G)
When Participant C read the report from being assessed for ADHD as an adult, they experienced “aha!” moments where things made sense, but also irritation that no one had intervened during school age. Participant C thinks that if they had received ADHD medicine as a child, their whole life situation would have been different.
At the same time that participants acknowledge the long-lasting challenges of ADHD, they also report possessing strengths including keen concentration and determination when highly motivated. For Participant H, having ADHD means that they have abilities that others do not:
I do not look at it as a handicap, I look more at people who don’t have ADHD as a handicap, who can’t manage to have seven balls in the air at the same time. When we who have ADHD talk to each other, we have no problem understanding each other or remaining connected. It’s those who don’t have ADHD who can’t keep up. They are the ones who are slow (laughs). (H)
Other strengths include an ability to improvise, owing to challenges with planning ahead, and speaking spontaneously and earnestly. Participant H feels that ADHD only becomes a problem when one has to operate on the premises of those who do not have ADHD.
The participants have developed various strategies and tools to manage challenges related to ADHD. Several participants (A, C, E, F, G, H) report that ADHD medication is helpful in a variety of ways including for improving planning ahead, memory, and impulse control. However, inner restlessness persists despite the medication. Other strategies that help participants include exercise, learning to pause and think through things before acting, and using music to steer one’s energy. One learns to adapt themselves to living with ADHD, but it is not something one will ever “be rid of” (G).
Experiences of music and music therapy Footnote 6
Prior to engaging in music therapy, participants had engaged in music in various ways: playing an instrument, learning to read music, working with music production, or listening to music throughout the day. Some had always wanted to learn an instrument, but never managed it on their own. Others had a history of playing in bands, touring and releasing albums. Regarding music therapy, some participants preferred individual sessions where they could try things out in a different way than in the group, or could more closely have their music preferences met. Other participants preferred groups, which afforded more diverse social aspects and musical experiences. Participants’ experiences of music and music therapy can be understood within five themes: regulation, motivation, mastery, social belonging, and self-development.
Participants experience music and music therapy as an important means of regulating several key features of their existence: energy, feelings, concentration, and thoughts. These features are tightly related to their experiences of both ADHD and substance use and are essential aspects of their daily lives.
Energy. Music is experienced as a flexible tool for “steering” the energy and restlessness that characterizes ADHD. Participant B experiences music as a “remote control” that can control all aspects of their life:
Can either turn up the volume, fast forward, rewind, pause. It is a universal control, quite simply. And I don’t understand why there isn’t more of it in treatment places here, music therapy. (B)
Participant B experiences music as a tool that controls all other tools and resources, such as “creativity and even sleep,” and has done so since childhood. As such, music is indispensable in Participant B’s life:
Music for me is just a journey, in this journey here on earth that allows me to control an energy within me that I have struggled with my whole life– to steer– and that is probably the essence of music, that you can use it for absolutely everything in life. All phases, all feelings, all thoughts. (B)
Other participants experience music as a way to “get out energy” (D, F) or calm down, depending upon what kind of music is used (C, F). Some participants experience the ability to control energy most strongly when playing instruments, such as guitar (F), while others feel it while listening to music during other activities. Participants express a refined understanding of what particular types of music have either calming or energizing effects for them. Some participants experience that loud music calms them down (C). The symptoms of ADHD make it challenging to achieve a sense of calm, and participants reported a rare experience of calmness through music:
…music therapy has been one such thing where I have managed to find the calmness that probably ordinary people do in many things, in a way. Which, of course, I don’t manage to do with many things. (G)
The energy participants feel is tightly related to feelings and thoughts.
Feelings. Participants describe several ways that music and music therapy are tools for working with feelings: expressing feelings, expressing oneself to other people, and coming in contact and exploring emotions.
It’s about expressing oneself emotionally in front of other people, not just for yourself. It’s that bit– it’s kind of a therapeutic thing. And I do that best with music. (H)
Participant H feels that as humans we want to have a word to describe each emotion, but that there are no words for many emotions. Instead, music may be a way to express those emotions (H). Participants use music intentionally to move out of a bad mood, to feel cozy, and to have good feelings without having to use drugs.
You get something– a focus that is positive and it helps in terms of addiction. You get good feelings without using drugs. (F)
Music therapy offers a means for participants to experience good feelings without having to use drugs.
Concentration. Music affords the participants a concrete means of promoting attention. Participants experience an ability to concentrate when engaging in music and music therapy that they do not otherwise experience. Participant B has a nuanced understanding of how music helps with concentration and describes the process they used for concentrating on schoolwork earlier in life. B would tap a foot along with the beat of the music, creating a kind of framework for the energy:
Following the beat…what lies behind there is that it kept me occupied…that little switch that makes us have a deficit in attention became saturated and then I could concentrate. (B)
With music playing through headphones, B could sit calmly in class and concentrate on work. Participant C becomes calm when concentrating on playing or singing and can even detach from the typical restlessness of mind and body. Participant E finds singing to be particularly helpful in holding concentration as E focuses on the melody and expressing the lyrics. Participant H also experiences the ability to hold and express a thought through music:
Even though I don’t speak very well, hop from one to another thought, in music we can hold a thought or an expression…[In the music], I have a common thread. (H)
Playing music provides an opportunity to practice concentrating and staying focused (H), which can enable one to “be in the moment.” Engaging in music enables participants to shift focus in a positive direction, which is experienced as freeing (F). By “being in the moment” in music, participants experience that time just “flies by”, including time in substance use treatment. Participants who play in bandFootnote 7 notice that their concentration is particularly sharpened when playing with others (F, G). Playing together also enables the group members to enjoy a shared focus, which is perceived as both enjoyable and enriching.
Participants experience that the music therapist’s ability to adapt music processes to the needs and abilities of those in music therapy helps lower the threshold for concentration and engagement. Several participants tried to take up instruments or learn about music earlier in life, but gave up when it became too difficult (B, C, D). Participant B experienced that the music therapist mentored B into a world of music programming that had otherwise been too difficult to access due to challenges with concentration.
Thoughts. Participants experience that music provides a means to shift thought patterns. They use music to shift to positive thoughts (F), to provide a contrast to heavy personal themes brought up in sessions with other substance use treatment personnel (A), or to shift away from thinking about substance use (D). Participants know how to use certain types of music at certain times and situations, to shift out of negative moods and cycles of thought. Participant D experiences that the process of music therapy strongly influences their thought patterns throughout the day, as it provides something constructive and future-oriented to focus on instead of perseverating on thoughts related to substance use.
All the way home, mostly when I’ve had music therapy, then I sit and enjoy myself with the music [played or recorded in music therapy] and think “I learned this one. I can do a bit better on this one next time” and such. But on the days I haven’t had music therapy, I usually sit on the bus and just [think] “I want to go home now, I want to smoke [hashish] now.” (D).
When leaving day treatment each day, Participant D leaves with “head raised” and feeling pleased with accomplishments in music therapy and therefore does not immediately begin thinking intensely about how they will get high. Participant D sometimes creates playlists the day before going to music therapy of songs that they want to try out in sessions. The act of creating the playlist constructively engages the participant so that they do not use drugs and replaces the intense desire for substances.
Participants experience that music has provided motivation during several life stages, starting from when they were in school and extending to motivation to continue in substance use treatment. Participant B used music to concentrate in school and without music playing in headphones, lost desire to focus on schoolwork. Participants experienced music therapy as particularly motivating since the music therapist uses what one wants to do with music as a starting point, whether that is learning to sing or play an instrument or learning to digitally produce one’s own music. The majority of participants expressed a desire to spend more time in music therapy, as they were aware of what music affords them in terms of pleasure, a purpose and also a “tool” for various aspects of life.
Engagement in music therapy became a motivation for staying in treatment or opening up for other forms of treatment. Music therapy sessions were experienced as something positive and “cool” to engage in which helps one to thrive during lengthy treatment stays (G).
I have enjoyed myself a lot with the music and have had a very nice time there, that has often given me new motivation and determination to continue in treatment. (G)
The progress that Participant G made in music therapy became a source of motivation for continuing to engage in sessions and further develop oneself (G). Music was the primary motivating factor for Participant H to begin medication for ADHD, so that they could have better focus and concentration for working constructively with music.
The active aspect of music therapy was particularly appreciated, “…getting to talk to someone where you can move around, do what you want, too, instead of sitting with a therapist and just sitting there (Participant D).” It was important that instruments used in music therapy matched participants’ interests as well as physical and energy needs. Though Participant D had access to a guitar at home, drum set was a much better match for their physical impulses as it offered the chance to be more physically active and “hit something without hurting.” Participant H gains motivation from playing with others in music therapy and recognizes that they can accomplish things in music therapy that they cannot in other settings (H).
The low-threshold aspect of music therapy was experienced as important for motivation. The music therapist is able to adapt the group and individual sessions so that participants can engage actively regardless of their previous musical knowledge. Participants found this low-threshold aspect of the band group to be crucial to their engagement, as even participants with no prior experience of playing instruments could contribute in some way (C). The low-threshold aspect of music therapy services is reflected in the policy that people in treatment can use the music room independently when they desire. For example, Participant D took the long trip out to the treatment center during the winter holidays, just to use the room and play drums.
Continuity with the music therapist was also experienced as important for motivation. Participant F notes that people who have been in rehabilitation several times experience a high volume of therapists and workers. Participant F experiences frequently meeting new people as tiring and therefore appreciates seeing the same music therapists across phases of treatment.
Motivation and mastery are tightly coupled in participants’ experiences of music therapy. Participants experience feelings of mastery and self-confidence when they recognize what they have managed to do in music therapy (E). Participants feel a sense of mastery and satisfaction when overcoming the challenge of learning something new, a type of persistence and payoff that has been infrequent because of ADHD (D). Living with ADHD, participants are used to beginning many things, but never managing to succeed with them except for music (G). This feeling of mastery is amplified when such successes are shared with friends:
…pleasure from feelings of mastery…a lot of it has to do with a feeling of mastery, the feeling that you actually manage something. And in addition that you can go around later and put on a song when you are with some friends, say “I’ve learned this on drums” or “I know how to play this.” You get a little, “Oh, cool!”. (D)
In such a way, the experience of mastery is re-lived when one listens back to a recording or shares such with others.
No disrespect to therapists or anything like that, but when you just sit there and talk, and leave there and [think] “ok, I had a conversation, I am satisfied.” But when you have had music therapy, you sit back and talk and in addition, you have learned something, you have managed something new. So you leave there with head raised, and I actually prefer to go to music therapy rather than the usual therapist. (D)
Managing something new in music therapy led to feelings of pride.
Adaptations and support from the music therapist helped participants experience increased determination and perseverance. Participant B viewed their music therapist as a “mentor” who helped adapt instruction in order to accommodate the participant’s challenges with concentration. Participant D experienced their music therapist as a motivator who reminded them, “you can do this.” In a context where many struggle with attending therapy sessions, Participant E shares that they have not missed a single music therapy session. Furthermore, when Participant E does not manage something satisfactorily in music therapy, they work on it independently in the evenings, which helps with mastery during the next session.
By their nature, the music therapy sessions offer positive challenges, for example, playing a solo in front of others, learning a new instrument or new techniques, or expressing feelings. Feelings of mastery came quicker when participants played instruments that matched their interests and needs. Participant D began with a motivation to learn many instruments, but eventually found that drumming was the most satisfying way to express the “foundational rhythm” that was in them. The learning process was a little easier, and motivation and determination where higher when participants engaged with instruments that matched their needs.
Challenges in music therapy can also be “negative” (H) and reinforce negative thought patterns and thus require support from the music therapist and peers to constructively manage. In general, it was a good feeling to master things, but participants could become easily irritated and sour when they did not manage something (G). Learning music is not always easy and patience can be a challenge, also in music therapy:
It has, of course, been tiring and my patience isn’t always at its peak, but I’ve sort of gotten through it and tried to not have such high expectations of myself. (G)
Participant G learned to take things step by step as ways to manage these challenges.
Music provides motivation to engage socially for several participants (A, B, F). Music therapy groups provided a reason to come out into the world and do something active instead of isolating at home. Participants experienced music as a means of engaging socially, which is a large part of its helpfulness for them. Some participants experience that playing music is healthpromoting even when one is alone (H), while others have found that it provides a crucial pathway out of depression, anxiety and social isolation (A).
I lived with my mother and father and was actually scared to go out at all. I was at home a lot, so it was music that got me out after I finished here, so that was the motivation to, in any way, engage socially. (A)
Playing in music groups was an essential motivator for Participant A to engage socially after they finished treatment. Other participants experienced that band groups were particularly helpful for social connection as they open up for various social and musical experiences. Participant F had been a musician for many years and took a long pause from playing until hearing about music therapy during the course of in-patient treatment. Participant F was highly motivated to play with others and joined the band group.
It was very gratifying and social to play with others instead of just sitting and chatting and drinking coffee, yes, that you have a shared focus. I think it’s very, very fun and you feel good feelings. (F)
Such groups were helpful both during in-patient treatment and in aftercare as they provided a new network and new friends, often without a focus on drugs. This drug-free fellowship enabled participants to have a shared focus on something positive and constructive, and offered a context where they did not have to talk about addiction. Such aspects made it easier to develop a satisfying sense of community.
It was like that—the good shared things we could talk about without all that muck. Everyone had a sense of belonging, which we could talk about. (B)
In previous social contexts, everything revolved around substance use, but in these music groups in treatment and aftercare, participants experienced social belonging where substance use was no longer a theme (A).
Discharge from treatment is often a highly vulnerable time, and participants experienced that music therapy and music engagement provided critical supports. Participants developed resources in music therapy that they could take further as strategies for the vulnerable time after discharge. Participant A learned enough music skills and developed enough self-confidence in music therapy during in-patient treatment that they dared to take contact with a music group at an aftercare program. Participant E planned to engage with music offers in their place of residence and participant G felt that the municipalities should be better equipped with low- and medium-threshold offers for people with various challenges. Participant B appreciated that the music therapist helped connect them with aftercare music services, as the “problems are not in treatment, they are outside of it.”
Participants’ experiences of music therapy reflect themes of self-exploration, evidence of self-development, and development of new identity. Participants experience playing music as a process of self-exploration, particularly through improvisation.
Because I wanted to find out what music would come out of me if I began making music totally openly…I just improvised, heard what the guitar did…came in contact with myself, with my own soul. (H)
Participant D experiences becoming a bit more “outgoing” version of themselves when playing drums, which is enjoyable.
Over the course of music therapy, participants can perceive their development over time, both on personal and musical levels. Learning to sing, including just daring to try it, is perceived by Participant E as a satisfying example of personal development. Concrete musical qualities (like increased vocal range), serve as evidence of musical development (E). Participant G was excited to perceive development from very limited musical ability to where they are now and finds value in such development: “As long as I have a potential for development in it, that it doesn’t stop and stagnate, then I think it is nice and fun.” Participant G wants to continue to “develop” themselves, not in order to play in a band or for others, but to be able to sit and play guitar to relax and find peace.
Participants found that music therapy gave them an opportunity to develop and practice a new identity, one that coupled music with sobriety.
Yes, to couple music and intoxication together is to make music a negative thing. Coupling music and sobriety, which is a constructive process, that is more what I do, a part of my identity, to remove substance use from my identity, beyond myself and for the world around me. (H)
Participant H actively used music therapy as a way to build up a new identity. Developing new identity is one way that participants “break the pattern” of addiction (H). Participants find ways to use music as creative solutions for their problems, instead of just defaulting to the substance use milieu (A). Participant C felt that music therapy did not have particular influence on ADHD aside from developing a new interest, but at the same time acknowledged that playing an instrument at home could be a constructive thing. Playing instruments gives a new way to do things to “break out” of the pattern of substance use.