Why can being diagnosed feel like grieving?

Recieving a diagnosis (or finding a label that fits you) can be joyful and empowering, but it can also be upsetting, confusing, and leave you thinking about how your life could have been different.

“Late Diagnosis” and Grief

“Disenfranchised grief” is when we’re grieving over something that other people don’t acknowledge as important. One of the most common forms of this is mourning “the life I could have had, if things had been different”. It can be hard to explain why you’re sad about something that never happened, or why the idea hurts so much. When you get an adult diagnosis, you might start looking at your struggles in a new light. ADHD is tied to difficulties focusing, planning, and being consistent (among other things) and it can be devastating that your failures weren’t because you were lazy or careless or “didn’t try hard enough” but because there were psychological barriers that required support and treatment.

We can’t know for sure what our lives would look like if one small thing were different, let alone if our entire school career had involved therapy, or medication, or accommodations. We can start to question who we could have been and feel deep grief and sadness over these possibilities. I’ve described this as having an “early mid-life crisis”, since this uncertainty and regret about the past is “supposed” to hit at middle age.

“How did this get missed for so long?”

Another aspect of grief for many people is the grief for the child they used to be, who didn’t get the support they deserved. As loving, empathetic individuals we can see our child-selves with more kindness than we do our current selves, and wish that little kid had been treated better by peers, teachers, or family members. Knowing that we taught ourselves to mask our emotions and needs, or were punished for things we now know are outside our control, can be devastating.

The SImpsons - Homer goes thru the Kubler-Ross stages in record time.

Stages of Grief: An Anecdote

Most of us are familiar with the “Kubler-Ross Model” of Grief through pop culture. Denial -> Anger -> Fear -> Bargaining -> Acceptance. Pop culture often neglects to tell us that the “stages” rarely happen in order, or one at a time. I recently joked that when I was diagnosed, the first stage of grief I went through was Acceptance, so it took me a while to notice the others. I was so happy and relieved to be getting support that everything seemed wonderful. It wasn’t until months later that I started to get Angry. I was angry at my parents and prior therapists for not noticing what was now so obvious to me, and angry at the mental health system that it had been so difficult and expensive to get the right support. Then I jumped to Denial: I refused to view ADHD as a disability and only talked about the positives: our creativity and strength in a crisis, our adaptability and empathy. Not bad in theory, but I was refusing to acknowledge the ways I struggled in my daily life, and how the structure of the world didn’t always fit my brain. When I was able to acknowledge these things… there was Fear. I was terrified that medication wouldn’t help, or help for a while then stop working, and my life would come crumbling down. I was afraid I would never achieve anything and that my dreams were all entirely hopeless. This turned into bargaining; buying every ADHD book on the market, listening to every podcast, watching every “life hack” video so that if something bad happened I’d have all the tools to prevent disaster (not that learning more is a bad strategy, mind you). 

These days I feel them all in bits and pieces. This isn’t the kind of grief that has a straight-foward beginning or end, but I can acknowledge that my relationship to ADHD is complicated, and so are my emotions. I like this person I’ve become, even if I could have been someone else, but I also make space for the hard emotions because it is hard sometimes, and we can’t hide from that.

Finding Hope for the Future

This has been a bit of a downer post, huh? I didn’t want to sugar coat it. Especially not when the main characterising feature of disenfranchised grief is that it doesn’t get acknowledged. So let’s acknowledge sadness, while knowing that we do it to make room for the joy. And there absolutely is joy to be found.

There’s lots of perspectives on ADHD, and you’ll find people who describe it as a blessing or a curse, an illness or an evolutionary advantage. There’s no one right way to feel, and most of us will feel a bit of both, and a million other things too (usually at the same time).

For many people, diagnosis is a relief. Finally having language to explain experiences and feelings that have been locked away for decades. It can bring a sense of community and closeness to find others who think and feel and struggle with the same things without shame (Thanks, ADHD Memes on facebook). It can also open up new doors, because with knowledge comes strategies - and medication for some - that can make old dreams feel possible again. Hopeless, distractible, lazy Felix couldn’t have survived a masters degree. ADHD Felix knows which parts of study are harder for them, and that they need more breaks, more kindness, and sometimes more support than other people, and that’s okay. My diagnosis gave me permission to treat myself with empathy, and to do what works for me, instead of twisting myself into a pretzel trying to doing things the ‘normal’ way.

Next Steps

Wrapping up the rollercoaster of ADHD discovery and grief, it can be a real time for people. Delving into mourning the could-have-beens and grappling with a delayed ADHD diagnosis can be painful, and you deserve to feel that pain without shame. Disenfranchised grief needs its moment. Let's give sadness its due, but don't forget there's joy in the mix too. 

Finding your tribe and having a lightbulb moment about your quirks, your strengths, your glorious weirdness… It's all part of the messy, beautiful journey. And with knowledge comes power - the power to embrace your unique self, develop strategies, and maybe even revisit old dreams.

So if any of this is sounding familiar, or you can see it coming closer as you tentatively explore your own diagnosis experiences, you don’t have to do it alone. It’s not just you. Get in touch to talk about this further, or just to get a pointer on where to go next. It’s all about your direction, and your choices.