The Importance of Grieving the Diagnosis of ADHD

This video highlights the fact that many adults with ADHD and parents of children with ADHD will experience a grief reaction to the diagnosis and move through various phases of grieving as part of the grief process. I believe that doing so is among the most important initial steps in not only coming to terms with the diagnosis and its implications for the individual but also proactively engaging the process of long-term treatment for the condition. Let me know what you think about this notion of a grief reaction and if you, also, experienced a grief reaction. If so, tell us what you found most useful in coping, accepting, and resolving your grief reaction.

Websites used in the video:

The Grief of ADHD by Lisa, CADDAC.ca website

The ADHD Grief Cycle – 5 Stages That Will Happen after Diagnosis. The ADHD Centre

Big Emotions from Learning you Have Adult ADHD. WedMD

To Medicate or Not to Medicate? The Decision-Making Process of Western Australia Parents Following Their Child’s Diagnosis with ADHD. International Journal of Disability, Development, and Education. (2007). Volume 53, pp. 111-128.

Books of mine that talk about this grief reaction, listed below:

Taking Charge of ADHD: The Complete Authoritative Guide for Parents (4th ed.) published in June 2020)

12 Principles for Understanding and Raising a Child with ADHD. (2020)

Taking Charge of Adult ADHD (4th ed.) (Published October 2021)

Treating ADHD in Children and Adolescents: What Every Clinician Needs to Know. (Published May 2022)

[nyarparablepsis]

I was furious when I got my diagnosis at 35. All the years of being mocked for being lazy, for not being able to focus on things I found boring, the utter callousness of doctors who told me that the myriad thoughts in my brain are a sign of psychosis, the inner wounds I had suffered. Now I knew why my education took so much more effort and time - but nobody would ever care. I cried a lot in the first year or so whenever I thought about it. It didn't help that I was told by two psychiatrists and one GP that adults should not need medication and that I should just pull myself together.

I think what helped was engaging with ADHD on the internet (learning more about it) and seeking some form of solace in things like ADHD memes (so that I could laugh, even if a bit teary eyed, about it).
I still get angry and sad sometimes, but only rarely.

[smileyginger]

I was diagnosed at 49, a little less than three years ago. The actual diagnosis was almost a relief - at that time, all of the systems and coping mechanisms I'd subconsciously put in place over the years were failing catastrophically (probably due in part to menopausal changes, which I think you've covered as well) and I couldn't figure out what was going on until I saw a story from the Chesapeake Center about women and ADHD. What I grieved, and still do from time to time, was that there were many things in my childhood that could have been different if perhaps we knew what was going on. I had very few friends, I struggled with emotional dysregulation and had next to zero frustration tolerance. I was always told I was "gifted" but school was a Sisyphean struggle, I was forever forgetting assignments, procrastinating and often bored. I had sensory stuff that was blown off. College was very difficult because of the lack of structure combined with all the other baggage. How much more could I have accomplished? How much earlier could I have had success in the workplace? How would my relationships be different? Those are the things I grieve. The diagnosis finally gave a name to the patchwork collection of symptoms and experience and has helped me understand myself a little better. Did meds fix everything? No. Do they help rein in the chaos? Yes, they absolutely do. I know they don't work the same for everyone, but they have helped me, and the way they work for me gives me a bit of space to set myself up better. Thank you, as always, Dr B, for your research and advocacy.

[zezezep]

Enlightened/Diagnosed twenty years ago aged 54, I was so thrilled to finally understand why a lifetiime of effort had brought little reward. The self-hatred that started mid-thirties gradually dissipated. However, now, at 74, I GRIEVE ‼because of insuffiencient time, energy, resources to make the life i desired

[CarolaSiegel]

If that title was meant to trigger reactions, it was well chosen. My first reaction on getting my diagnosis aged 49 was an intense feeling of liberation and relief. It turned me from being failure on two legs into a human being with some issues on hardware level. The second book I bought was Sari Soldens book, where I got introduced to the grief cycle in an early stage of reevaluating my entire life from a new perspective. I went through the cycle in a different order and have done so repeatedly. Still doing so (18 yrs after diagnosis), because there still are situations where I discover new aspects of being who I am. It means lifelong learning on a different level.

[acousticshadow]

I remember talking about it with my therapist, and she just sorta brushed it off. "So, what are you gonna do about it?" Made me feel bad about feeling bad!

[justinwest]

I experience a lot of grief, anger, and some resentment, but it's not related to the actual diagnosis at all. That was a relief and a vindication. It's all centered on the past and, to some extent, the present that I could have had.

[FelixStanek]

I recognized the parallels to grieving but didn’t know it was actually a thing. I’m glad to hear it is and what I’m experiencing is normal and necessary.

I’m still disappointed about the lack of the dad joke but I understand why you wouldn’t include it in this particular upload.

Thank you for this channel, your lifelong work and dedication. You are a mondial treasure.

[ave_rie]

I went/still occasionally go through smaller waves of grief. It was a relief to be given treatment and at the same time, sad & shameful for me at least. It took me almost a year to fully accept it and stop skipping medicine or non-medical adjustments. One thing is for sure, CLARITY is soothing. resources like this channel, books, practices, etc, + small adjustments contribute to hope and keeps me from getting depressed/developing other disorders.

[TimEav]

So important to talk about this. I was thrilled when I got the diagnosis and got meds, because I thought it meant I was cured. But months later when the truth of what life was going to be like really landed, it hollowed me out for years. I still deal with grief sometimes, and it’s been 15 years.

[ladyoftheflowers]

I actually was glad about my diagnosis. Got it just last year in my 30's. It was not until getting an MA in Psych and realizing I meet DSM criteria that I learned I have ADHD. The medication works wonders and has helped me achieve far more than I ever had before! I used to always wonder what held me back in the past! Now I know and there's no regret!

[Magicme]

Recently diagnosed at 45. Of course I could look back and be really bitter. ADHD has wrecked everything I’ve tried to do in life, more or less. Turns out I did have teachers that tried telling mum that there was something wrong with me, but she didn’t listen. When I look at it a bit deeper, I can see that she also has ADHD and probably had no idea there was something wrong with *her* until I got diagnosed. People in general don’t know much about neurodivergence. We are the front lines, so to speak. That sucks, but it is what it is. We will keep talking about it and spread awareness, and hopefully future generations won’t have to struggle like we have

[ZuogQaag]

I'm stunned. This is never discussed. My adult diagnosis was one of the darkest days of my life: it removed hope. It changed the way my spouse thought of me for the worse. The hope was misguided, but we'd had it. I experience complicated, unresolved, grieving that is re-inflamed every time I have an ADHD crisis. Like an athlete who's lost a limb, the diagnosis is a constant reminder that my life will never be what I'd hoped for. Like someone with a chronic, infectious, illness, the diagnosis stands between me and everyone I consider letting get close to me, as the chaos of ADHD impacts everyone in its vicinity. When things go well, I have imposter syndrome; when things go poorly, the anger can only turn inward. I've lost my career, my wife, my child, my siblings, my friends, my job. Worse, I've lost hope. I understand the chronic mental illness now; I use that knowledge to minimize how often grenades blow up in my hand. But my the diagnosis remains the day my hope for a normal, stable, life, died.

[jakeku]

Given the circumstances of my youth, I never felt any anger over my lack of diagnosis. but I still struggle with grief over the life I wanted to have. The life I thought I could I have before my breakdown and diagnosis. Double the fun to go through this all at the onset of middle age!

[barbwhite]

I was just diagnosed about 4 months ago at the ripe old age of 75. I received little or no support or acceptance from my friends. I am relieve to find this subject explored by Dr Barkley and also to have further reading on the subject. I received the diagnosis and have spiralled down in depression not understanding why. It's now quite apparent. I will be much more gentle with myself as I attempt to dig myself out and continue on a newly enlightened path. Thank you so much.

[hossguy]

Just got my diagnosis last week. I’m 45. I’m in the anger phase for sure.

[Em-efuk]

I'm so glad to hear you speak about this. The majority of the time people say how their diagnosis made sense and how much it helped. That wasn't my experience and I felt like I was the only one who felt the grief/denial/anger. I'm finally coming to accept my diagnosis 2 years later on. Thank you for speaking about this and normalising this kind of reaction and how important it is to acknowledge.
The thing that has helped me is that I'm currently experiencing depression and I think the grief is a major contributor to my depression. I decided that educating myself about my ADHD might help me understand it/me and help with depression. So I've been doing things like watching your channel, going to expert led focus groups via ADHD UK or joining Seed Talks and talking to people with ADHD. It's slowly starting to shift my mindset to acceptance, not push against it and to be kind to myself.

[BlinkiesNoGood]

I have never grieved my daughter's diagnosis. But that's because I'm grieving my own. After her teacher spotted the signs and suggested we have her evaluated, I got a textbook on ADHD (edited by Dr. Barkley in fact) and read it cover to cover ... and suddenly so much of my life made sense. And not only my life, but others in older generations of my family, some of whom are no longer with us and who will never know why they were the way they were.

I don't know if I'll ever stop being angry. At all the teachers who told me I was lazy and "wasting my potential" instead of even once showing compassion and checking to see if something else was going on. Sometimes at my parents, for dismissing my problems and concerns (but in their defense, the hereditary nature of ADHD means they grew up normalizing these things). I'm angry that I'll never know what I could have done or who I could have been if even one person had shown me that compassion. And you know what? I'm okay being angry. Because they failed me, and I'm allowed anger about that.

I don't grieve my daughter's diagnosis because it came early enough that I can do my best to make sure she won't have to go through what I went through. I'm making sure she has the medication and support she needs, and the knowledge to understand how her brain works and how she can adapt to solve problems in ways that work for her. Her diagnosis led to mine, but our outcomes will be very different, and I am so happy for that.

[lillianbarker]

Accepting the truth about my adult son’s ADHD has been one of the hardest experiences in my life. At first it was a relief to know the cause of his difficulties. Then came our struggle explaining it to others and now the effort to help him find a career. My brilliant and lovable child is in his mid thirties, underemployed, without a partner and dependent on his parents. He managed to get a college degree before his diagnosis and I still hold out hope he will find his niche, but I still feel shame, worry and great sadness.

[bopuc]

Interesting. I imagine it varies greatly across people and their situations. Receiving the diagnosis (and treatment and therapy) was a relief for me because it helped answer life-long questions and has allowed me to finally "start being the me I always knew was there." And while I still from time to time get that "if only I and family had known this earlier!" feeling, the only acute moment of grief was when I tried the stimulant medication for the first time and the effects kicked in… and the implications of "all those wasted years" hit me full-on. I had to sit down and cry for a bit. But acceptance of both the diagnosis and "what it means for me" were immediate. I'll be 50 soon but I feel like I am just at the beginning of a new life and it is exciting.

[spikebradford]

Grief has been a real issue for me, having been diagnosed 2.5 years ago at age 52. After 6 months of elation at finally understanding my brain better and medicating it, I spent the next year seriously angry and depressed (and often, drunk) with grief. Now, I'm finding the old adage about grieving a lost loved one to be true: you never get over it, you just learned to live with it better. I'm far from where I want to be on this, but working on it. Thanks for this video.