Below is a recent interview from a patient who took part in the PROUD study in London I would like to thank him for taking the time to answer my questions, his articulate descriptions provide a fascinating insight into what it is like to live with ADHD on a daily basis and his reflections on the PROUD clinical trial, provide us, as researchers, a valuable insight into what it is like to participate from the perspective of a patient.
- What is it like to live with ADHD?
Please describe your main symptoms. Have your symptoms changed since childhood vs. adulthood?
I find myself easily distracted. It is very difficult for me to carry out long tasks that require a lot of attention or very tedious tasks. I have racing thoughts going through my head 24/7 and it is very difficult for me to shut them off and focus on what I am doing. I also find myself experiencing mood swings very often. I have multiple highs and lows throughout the day and it is very difficult for me to maintain a stable mood. Also, when I read it is very difficult for me to retain the information and remember what I have just read. I also have trouble trying to organize my thoughts and speak in fluent sentences because my mind is thinking about so many things and I just want to get all of them out.
I would say my symptoms have gotten worse as I transition into adulthood, but it could be because I am more aware of what is going on and the science behind it. I always had anxiety when I was a kid but never really depression. I notice that as I get older I find I get down into slumps and feel really unmotivated. That is the main difference from my childhood and adulthood experiences.
When were you diagnosed with ADHD? By whom? How did you feel about getting the diagnosis?
I was diagnosed when I was roughly 12 years old. I went to see a Doctor to get tested because my reading comprehension was very low and my test taking ability was terrible as well. They discovered that I had ADHD as well as Performance Anxiety.
As a kid, you never want to be told that there is something wrong with you, but it was good to know why I was having the thoughts I had and what exactly was going on. This led me to do extensive research on these mental illnesses and get a better understanding of what was going on and how to better handle my symptoms.
How have you been treated (medication/ psychotherapy)? What are the effects?
I was treated for my anxiety with Anti-depressants as a kid but came off of them due to them making me emotionally numb. I was never treated for my ADHD as a kid because the doctors thought that Anxiety was the main culprit of my problems, but I have actually discovered that ADHD is the main issue.
I did have a psychiatrist for a while as a kid, but I can’t remember much from the sessions and I don’t think they were very helpful. I did do CBT towards the end of 2017 and that did prove to be quite helpful. I just recently decided to get treated for my ADHD with medication just after I finished the Trial at Kings College because I felt that my symptoms were really beginning to affect my life. So I am currently on 40 mg Elvanse and I am on the waiting list for CBT to try and give psychotherapy another shot.
How does ADHD influence your life? (Work, friends/partnership, hobbies etc.)
I am an Actor, so remembering lines and understanding things thoroughly is absolutely crucial! My ADHD comes in the way a bit because sometimes I zone out and don’t completely listen to instructions or other actors. Also, reading scripts can be a bit difficult in trying to retain the information and focus on what I am reading.
I find that it hinders my relationships because I am a bit all over the place sometimes and do not give my friends or family the time or attention they deserve. I have also found that my ADHD causes regular mood swings so sometimes I am feeling depressed and do not feel like doing anything. This affects my work and relationships as well as my hobbies.
Do your friends/ colleagues know about your illness?
Yes, they do. I find it extremely important that everyone understands why I may act strange sometimes and also, they will understand me better. It is not something that I am ashamed of. It is just the way my brain works.
What is the worst thing about having ADHD?
The biggest issues are not being able to focus or getting easily distracted. Another of the big issues I have is the depression side of things. It also drains all of my energy and I end up not feeling like doing anything.
Do you think ADHD has any positive influences in your life?
One of the big benefits of having ADHD is always planning everything! I have to always be very prepared, but it is also a bad thing because it causes me anxiety sometimes. But then again, I don’t believe I would be the same person I am now if I didn’t have these issues.
- Study and Intervention
How did you learn about the study?
I believe I learned about the study from the Clinicaltrials.org website.
What motivated you to participate?
I absolutely love psychology and I am always interested in learning about the things that affect me personally. I am always doing research on mental health because it allows me to get a better understanding of what is happening on a more scientific level. It gives me more insight and allows me to better deal with my symptoms.
What were your expectations about the study before you started?
I expected to get a better understanding of ADHD and even finding a new strategy on coping with my symptoms.
Which intervention did you participate in, when?
What did you like about the intervention? What did you dislike?
I liked the fact that it kept me busy and it also forced me to be proactive and accountable because I couldn’t lose the phone or the wrist band tracker. It made me work on that aspect of my ADHD because I do tend to forget to do things and I am always losing things. I also found that my depression is onset when I am not doing anything so having to be accountable for this exercise and doing what I was supposed to do kept my mind busy.
The only thing I didn’t like was the wrist band and having the wear it all the time because it is quite unattractive, and I do travel a lot so having to keep it while traveling it abroad and charging everything was just a bit overwhelming.
Was the intervention helpful? (Any effects on ADHD core symptoms, mood, sleep, weight, fitness etc.?)
I am already a very active person, so it didn’t really change anything as far as fitness goes. It helped my sleep patterns because I was more aware of how much I was sleeping because I had to write it down. I feel like it helped my mood a bit because I was focused on phone ringing and answering the questions, so my mind was wandering off and causing me depression.
Was it difficult/easy to use the App?
The app was extremely easy to use but it was a bit tedious when it would go off every hour or so and was a bit annoying when I was busy or working. Not to mention that I couldn’t cover up the tracker with a sleeve or a jacket because of the light sensor.
Would you recommend other people with ADHD to participate in the study? Why?
Yes I would because I feel like it gives people a better understanding of their mental health and gives them some helpful things that they can take away from the study to implement into their life. Having a mental illness does not mean you are less of a person or less capable, but it is just important to understand what is going on. If you understand what is causing the symptoms, then it is easier to find ways to overcome these issues.
Any suggestions/ways that the researchers could improve the experience for people in this study?
I would recommend updating the technology and having a more advanced wrist band sensor that looks more like a watch like apple watches or fitbits. It is an amazing study and I am very happy with how it was conducted. I wish I could offer more ways that you could improve the study, but my experience has been extremely satisfying.
Adam Pawley is a clinical neuroscientist at King’s College London. He is running the CoCA PROUD trial in London.