How Does an ADHD Diagnosis Change Your Life?

On the day I received the diagnosis I came home and prepared dinner as if nothing had happened. This was not what I had expected. I had expected something to change with a snap.

What changed did not come that day but in the following weeks, and it did not come from where I expected. My symptoms were the same. I was still searching for my keys. What changed was the sentence I said to myself while searching for the keys.

A diagnosis is not a treatment, it is a piece of information. But the effect of this information comes out in the same form again and again in the accounts of people who have been diagnosed.

The first thing reported most often: relief

The qualitative study by Young and colleagues (2008) with patients diagnosed in adulthood reports mixed but distinct feelings in the period after diagnosis. One of the most frequent is relief.

The source of the relief is this: learning that the sentence you told yourself for years was wrong.

You were not lazy. You were not indifferent. What you struggled with had a name and an explanation.

This may sound like a small thing. For someone who described themselves with a wrong sentence for twenty-eight years, it is not small. This is the loosening of what appears in the glossary as internalized stigma.

A diagnosis does not change the past. It changes the way the past is read.

What follows: anger and grief

After the relief, something else comes for most people: this information could have been known earlier.

The things being grieved become concrete:

• Accommodations that could have been made at school but were not
• Programs dropped, jobs that could not be kept up
• Years spent with wrong explanations
• The extra energy spent to get the same result as everyone else

For me this stage came later than I expected and lasted longer than I expected. The first weeks went into learning; the anger came afterward, in the middle of an ordinary moment. I dealt with it in detail in the article on grief after diagnosis; the glossary also has an entry on grief after diagnosis.

The question of identity

The study by Schrevel and colleagues (2016) shows another dimension: after the diagnosis, questions about identity arise.

Telling what is ADHD and what is yourself takes time. In the first period every behavior settles under the diagnosis: messiness, forgetfulness, sudden enthusiasm, even the sense of humor. The glossary entry ADHD as identity describes this stage.

For me this lasted a few months. At some point I noticed that attributing everything to the diagnosis was also a kind of escape: I was handing the responsibility for everything I disliked about myself over to a diagnosis. The distinction became clearer with time, and as it became clearer I felt relieved.

The question the same study asks is meaningful when approaching treatment too: does getting better mean becoming someone else? The answer is no, but asking the question is legitimate.

What changes in practice

Access to treatment. Without a diagnosis, medication and ADHD-specific psychotherapy do not come up. The European consensus statement (Kooij et al., 2019) describes treatment as a multi-component approach: information, medication and psychological support. The doctor decides which component suits whom.

Being able to ask for accommodations. A diagnosis is needed for official accommodations at school and at work. I collected the workplace side in the article on ADHD and accommodations at work.

Being able to ask for help in the right place. People who have searched for years for solutions in the wrong place make much faster progress when they find the right heading. Before the diagnosis I was reading time management books; when I understood that the problem was not time management, what I was looking for changed too.

The sentence said to yourself changing. This is perhaps the biggest practical effect. The sentence "I am incompetent" and the sentence "this is hard for me, I need to build a system" produce different behaviors. The first leads to shame, the second to a list.

What does not change

This needs saying too, because disappointment is common.

The symptoms do not go away by themselves. A diagnosis is an explanation, not an intervention.

Systems do not build themselves. Knowing what is hard does not make it easier. I experienced this most sharply in the first months after the diagnosis: I now knew why I procrastinated, and I was still procrastinating.

The people around you do not automatically understand. Some people do not take the diagnosis seriously, some think it is an excuse. I dealt with this side in the article on stigma in ADHD.

The past does not come back. There is no making up for the lost years. This is where the weight of the grief comes from.

How the first six months go

There is a sequence that comes up often in the accounts of people who have been diagnosed.

1. The first weeks. Reading, learning, getting to know yourself. An intense and generally good period. Trying to fix everything at the same time is a common mistake at this stage; the energy is high but scattered.
2. The following months. Anger, grief and rereading the past. In this period old scenes come back by themselves and are read with fresh eyes.
3. After that. Rebuilding. Setting up systems, treatment decisions, deciding what you can change.

This sequence is not the same for everyone and does not follow a straight line. But reaching the third stage is possible not by skipping the second stage but by passing through it.

What changes for the people around you

A diagnosis seems like a one-person event, but it is not. While you reread yourself, the people around you reread you too, and this reading does not always go in the direction you want.

Some are relieved: they learn the name of a pattern they could not make sense of for years. Some get defensive, because the diagnosis opens their past interpretations to debate as well. Some say nothing, and this silence is the hardest.

What worked best for me was explaining the diagnosis one person at a time with concrete examples instead of announcing it like news. The sentence "I have been diagnosed with ADHD" leaves an empty space on the other side, with unclear content. The sentence "this turns out to be the reason I promised you three times and forgot, and now I will try this" is understood.

Whom to tell, when and how much is a separate matter; I handled the two separately in the articles on disclosing your ADHD diagnosis and explaining ADHD to your family.

A few things that help in the first year

Not trying to change everything at once. Setting up ten new systems in the enthusiasm after the diagnosis ends with all of them collapsing three weeks later. Starting with one thing is less satisfying but lasts longer.

Choosing whom to tell. You do not have to tell everyone about the diagnosis. The decision to tell cannot be taken back and does not meet the same response in every setting.

Measuring something concrete. "Do I feel better" is a vague question. "How many bills did I pay on time this month" is an answerable one. Seeing the change makes it easier to carry the weight of the second stage.

Putting the expectation in the right place. The promise of the diagnosis is not that your life gets easier. The promise is this: that you can begin looking for the right tool where you struggle.

In my view the biggest effect of the diagnosis is here too. My symptoms stayed the same, but I now know what to do with them. The difference is that a single sentence took the place of a twenty-three-year question mark: this is not a flaw in my character, it is something that can be worked on.