Have you heard of the 5 stages of grief? It is a model that psychiatrist, Elisabeth Kübler-Ross first wrote about in her book, ‘On Death and Dying’. Elisabeth identified 5 emotional stages that someone goes through when they lose a loved one.
Ever since her groundbreaking work, Elisabeth’s model has been adapted to other emotional losses such as the end of a relationship.
In today’s article, I adapted the ‘5 stages of grief’ to describe the emotional journey adults with ADHD go through when they are first diagnosed with ADHD. While finding out you have ADHD, though it doesn’t involve the loss of a loved one, you are grieving the loss of your old identify. The old you who didn’t know they had ADHD. This might not seem like a big deal… in theory. However, when it happens to you (even if you were 99% sure had ADHD), it can still be earth shattering. Everything you knew about yourself changes with this new piece of information.
Everyone processes their ADHD diagnosis slightly different. Some people spend longer in one stage than another. Some whizz through all the stages while for others, the processing takes longer. No one neatly goes through one stage to the next; there is a lot of jumping around.
Here are the 5 stages:
1) Euphoria – It might last minutes, or days. Finally, there is an explanation for why you are the way you are. You aren’t crazy! There is a name for your struggles.
2) Disbelief – Finding out you have ADHD gives you a greater understanding of yourself. But, it also shakes your self–identity to the core. You have to rebuild your sense of self with this new knowledge. You might question if the person who tested you was accurate.
3) Anger – The anger can be at yourself, at other people or at ADHD for existing. Why didn’t I find this out sooner? Why didn’t my teachers, parents or wife / husband notice?
4) Depression – Sadness and depression. A sense of loss of what could have been. You might find yourself thinking that your life would have been easier, happier, more successful, richer, etc. if you had known years ago.
5) Acceptance and Hope – This is where you embrace the new part of you. You realize that the strengths you have are related to ADHD; that without ADHD, you wouldn’t be the person you are today.
While I don’t have ADHD, when I was 28 years old, I was diagnosed with severe dyslexia. These are how the stages played out in my life: For the first 24 hours, I was exceptionally happy; almost ‘high’. I had always thought my struggles were because I wasn’t clever, now I knew that wasn’t the case. There was a reason why the world seemed confusing and muddled for me.
The next emotions were (2) disbelief and (3) anger. The detailed report by the psychologist didn’t match who I thought I was. I was really angry it had taken me 28 years to find this out. The anger then disappeared, and was replaced with (4) depression. The disbelief continued. I kept replaying in my head all the embarrassing things that had happened during my school days and felt really sorry for the little girl who used to worry in bed at night because she didn’t know how to spell words. Finally, there was (5) acceptance as I realized that I didn’t want to waste any more of my life. I made a decision not to struggle any more. I made changes in my life to work with my strengths (which is what I encourage all my clients to do). I made peace with every part of me.
When you are first diagnosed with ADHD, there is so much to learn and research. There are also important decisions to make, such as whether or not to take ADHD meds; which means, paying attention to how you are feeling can take a back seat. You might find your emotions creep up on you gradually or suddenly hit you one day. Acknowledge each one when it appears. Knowing about the 5 stages of emotions is helpful. It doesn’t take away the pain, but it does help to know you aren’t going crazy.
Surround yourself with understanding people. Getting diagnosed with ADHD can make you feel very lonely. There are still people who don’t believe ADHD is real or wonder why as an adult you would ‘bother’ to get tested. There will also be people who aggressively question your decision to take ADHD medication or your decision not to take meds. It can be hard navigating these people when you are feeling vulnerable. Find people that are understanding and kind to spend time with. When you are feeling stronger, you can deal with everyone else.
Don’t judge yourself or your emotions. You are unique; so are your emotions. There is no right or wrong way to feel. If you are feeling it, accept that it’s important for you to be feeling that emotion at this time.
Process them in a way that works for you. Work with a therapist, join a support group, write a journal, etc.
Be extra kind and gentle with yourself during this time. If you are feeling fragile, don’t set yourself on big projects or put yourself in unnecessary stressful situations. Practice extreme self–care.
If you are new to ADHD, download ‘Adult ADHD 101’. It will help you to navigate the practical things you need to know and it’s completely free.
What emotions did you experience after being diagnosed? leave a comment below!
I really enjoyed reading all of these. Now I don’t feel alone or as stupid. I guess everyone is on their own journey. I found out 5-17-18 at the age of 68 that I am ADHD.. During counseling for another matter the therapist said “have you ever been tested for ADHD” and I said no can I? Well, I now know. Just wish I could of known sooner but alas I know this was when I was supposed to know. I know I need to find a support group. Thank each & everyone for your words
This and these pages are opening my eyes! I was diagnosed with ADHD twelve years ago (late in life, I am 50 now). Since I was working with problems due to PTSD I experienced the Disbelieve state right away, and until now, unfortunately. Maybe it had to be that way, so I could really work my way through the early traumas of mine. I did, and recovered. But, I did not get rid of my hyper state of mind. It has been, and still is, a fight every day to manage my energy and all the trouble around it (forgefullness, lack of consentration, restlessnes (in mind, in feet), the urge to get away from to-many-impulses, organised activities and more).
Disbelieve, is about to turn into anger 🙂 because I now believe that I suffer from ADHD (maybe, I think, it could be a late effect of PTSD – but I doubt more and more, since there is no natural triggers that make me the way I am/react anymore).
So, if … still a bit in disbeliev … But, I feel angry now. Because I really hoped that dealing with the traumas would make me calm and consentrated. I feel, that if …, when, I come to accept having had two diagnoses, and now left (for ever 🙁 ) with one, it will take me on the way into sadness. A while. ‘Because I know myself good enough to see the road ahead. I will accept and find peace with it. But not yet. Who knows – perhaps I can thank my hyper energy that I got healed from PTSD, I never gave up understanding, confronting and dealing with tough issues, which I am happy to have managed 🙂 I hope, and believe, that these pages, Jacquline, will help me to understand more of ADHD and my self. Thank you for (me) finding them 🙂
Hello! Its so nice to share this and to read other’s experiences. I was diagnosed just this year at 33 after seeing (by chance) a therapist who specialized in ADD/ADHD. I went to see him with my mother because I was quite literally frozen in depression, shame and thought I would be better off gone. Depression was no stranger to me. It’s been my “primary diagnosis” since my early teenage years. Depression caused by years of struggling and failing, badly. At 28, I separated from my fiance and father of my son, foreclosed on the house, moved back in with mom, and took a series of jobs that had nothing to do with my degree and most didn’t require a degree. In other words, I am a queen underachiever.
Anyway, that therapist was able to peel back the layers of depression and anxiety and see through to the root cause: ADHD combined type. In a serious way, apparently. It kind of felt like this big, silly (but annoying and mean sometimes) bird named ADHD started laying really bad eggs. In the form of…depression and anxiety.
How did no one notice that crazy bird?? Well, my younger brother has autism and is only semi-verbal at a maybe 18 month old level. Like many adults with autism, he has profound abilities but also profound deficits. When he was flushing everything he could find down the toilet and running out of the house, I was usually introverting, getting in sneakier trouble, or rollerblading for hours on end. My brother needed so much more and I felt pressured to be a “good girl”.
Now, at 33, I’m taking it all in. Probably too much, like us with ADD do. The books, websites, forums, YouTube videos! It really does feel like starting a new life in a way…shedding the shame of feeling like a “bad” person.
I’m an Australian 45 yr old female, just diagnosed in the past 3 weeks through 2 psychiatric evaluations. For years I’ve felt and known something hasn’t been right as I’m always late, easily distracted, can’t focus and get so bored with basic tasks at work and struggle to complete things. A couple of years ago my mother gave me my old school report cards dating back to infants school in 1978 through ro high school in 1989. I was always underachieving and barely passed subjects. I’d been searching for answers and had a feeling other comorbidities were present such as dyscalculia and dysgraphia that my reports strongly suggested. I day dreamed and seemed in a world of my own with little awareness of the goings on around me, according to my PE teacher. I love photography and things i enjoy i can hyperfocus on though i never knew what this was called. One day this I came across information about Adult ADHD and finally it made sense. I am still in a grieving phase and also feel so lost and alone. I quit my job as a hospital administrator after 10 years in August and took all of my unused annual leave and long service leave. I now have to find a job but struggle to know what else i can do other than administration which i dread. I’m seeing a counsellor for alcohol addiction issues to see if its bad enough that it would stop me from being prescribed medication. Tomorrow i see an ADHD coach for my first session.
38 year old mom, and finally all my struggles through life boiled down to one thing: ADD. I was so excited to talk to the psychologist to try and confirm this, and when she did, it still shocked me. I thought she might be wrong, I may be wrong (as usual missing something). This week, 2nd meeting only, as I discover more and more issues that I had beibg all related to ADHD, I cry as I have never cried before, and I ache inside like I haven’t done in years. Its a raw, deep grief, and I can’t even try to explain exactly what for. Oh and mixed feelings of relief on some issues (wow, not my fault) and intensified feelibgs of beibg a ‘broken’ human being.
An interesting subject-matter…I am almost 65 and became aware of my “issues” around the age of eight. Back then, teachers and parents grew impatient with my lack of focus and progress. Other kids marginalized me as stupid, unfriendly, or just plain weird. I lived with low self-esteem until much later, after having dealt successfully with an alcohol problem.
As self-knowledge and success grew and deepened, I learned to deal more effectively with triggers, etc. My wife, who does not have ADHD and PTSD issues, has helped me to navigate emotional issues to a great degree. I also make use of sites, such as this, and other information resources. Thank you All, who come here and share your journey.
I’m in a rather selfish way glad to hear from other middle agers about late diagnosis of ADHD. I know I had it as a young child but I grew up in a very weird and abusive family so of course I wasn’t diagnosed or treated. In my 30s I was diagnosed with Bipolar II after being unsuccessfully treated with depression meds for years. This year, at the age of 53, I finally figured it out.
I have and am still going through the stages but anger was the first. I looked back at all the crazy struggles I’ve had in life, particularly in the work place and with driving. It all makes sense now, but I’m so angry that so much of my life I wasted feeling like there was something wrong with me and I was just not smart or loveable or anything good. And then the job situation over and over again, not getting along with people, never being recognized for the good work I did, etc.
I guess I’m still angry and its been a couple of months now. I’m still trying to figure it all out. In the meantime, I’m out of work again and I know my husband is stressed to the max. I feel awful about it. What can I do????
I’m glad there are forums and places to go where I can learn more and know I’m not the only one.
I’m a psychologist and I wasn’t diagnosed until two years after finishing graduate school. To some extent, I can retrospectively see these stages playing out since I was in 1st grade, including feeling upset that entire staff of psychology professors never bothered to mention that I looked pretty hyperactive & that it could have been associated with a lot other issues I obviously struggled with.
There was never any other perception that I was not hyperactive from birth and
; along with losing my hearing at the same time made me aware that I was not on the same planet as all the other people I dealt with every day.
As a child, I channelled that energy into sports, particularily swimming and competing again as a Masters swimmer continuing the family tradition of swimming, combined with the arts and sciences- always questioning why the world is the way it is…surrounding yourself with a great group of pals and a supportive family goes a long way towards controlling impulsive outbursts of anger and; yet allows more tolerance of the other people when you see their struggles.
I did have medications at the age of 7 and without it, I would not have entered second grade having been thrown out of first grade and was able to learn how to speak and thus communicate fully. Being a reader from early on really helped.
These days are different but one has to check whether it is adhd or some other environmental factors. The key is to control it and yet know when to let it off the lease and enjoy the superb creativity that can come along with it.
I feel sorry with anyone with dyslexia, I grew up with wonderful childhood pals who had it and they were abused in school and called names because they could not read. We always did our best to make them feel wanted despite the school. system’s bias.
I never went through disbelief, personally. I was diagnosed with ADHD at 45, but I had know there was something wrong/different with me since I was a young child. I lacked the word to explain my feelings, and spent decades trying to understand. One of my therapists (for depression) commented that I was particularly self-aware.
If I’m going to be honest, however, Underneath all my jokes and humor, lies an undertow of anger. 45 years of shame and self -hatred, never being a good enough husband/father/person, constant social mistakes, being a ‘loser’, has left its mark. Some days I deal with it better than others, but, for me at least, it’s my struggle as I work to acceptance/hope.
Thanks for letting me speak. 🙂
Thomas, like you i was diagnosed at 45 (six months ago). I feel exactly as you do with the exception of still not coming to terms with my diagnosis
Hi Ralph, Sorry to hear your ADHD wasn’t diagnosed until later in your life. No you are definitely not alone in how you are feeling. As knowledge about ADD is growing and experiences like yours will be less and less common. Although that doesn’t take away from the pain and frustration you are feeling. However I love that your attitude. Its so positive and proactive.