Why words matter so much right now
When someone tells you they’ve been diagnosed with ADHD at 35, 48 or 62, what you say next matters more than you might think.
A late diagnosis usually builds on years of being called lazy, scatterbrained, too much, not enough, impulsive, too loud, or “not trying hard enough.” For many of us, a diagnosis brings relief; however, it’s important to remember that it can also bring grief, sadness and anger, all at the same time: relief that there’s finally an explanation, grief for the years we have already spent struggling without one, and anger that nobody noticed sooner. As a late-diagnosed person, trust me, I have experienced all these emotions and more!
In my personal life and in my work with clients, I’ve seen how a single offhand remark from a friend, partner, or colleague can undo weeks of hard-won self-understanding. Most of these remarks are well-meant. That’s exactly why I decided to put pen to paper and write this. I also explored this theme in my TEDx talk, ‘Living Beyond Your Labels’: the words we use, and the labels we give each other and ourselves, are powerful.
Eight things not to say
1.Everyone’s a bit ADHD these days.
For a person who has experienced a lifetime of challenges, of feeling ‘different’, feeling like you don’t fit in, this is one of the most hurtful things you can say to an adult diagnosed with ADHD later in life. Why? Because it turns a clinical diagnosis into a personality quirk. Everyone loses their keys sometimes. Not everyone has spent forty years missing deadlines, losing jobs or feeling like they’re running on a different operating system from the rest of the world. Saying this suggests our struggle isn’t real, just ordinary.
2.But you’ve done so well in life.
Many late-diagnosed adults have done well, often at enormous hidden cost. I’ve achieved much in my life, including a BSc, MSc, and my TEDx talk, ‘Living Beyond Your Labels’, to name a few, but these come at a massive cost: overwhelm, burnout, masking, etc. Behind the career or the tidy home, there may be all-nighters, constant anxiety, overwhelm, elaborate coping systems, masking, tears and sheer exhaustion. Success doesn’t rule out ADHD. Often, it’s why nobody spotted it.
3.You don’t look like you have ADHD.
ADHD doesn’t have a look. The image of a hyperactive young child bouncing off the walls has kept countless women, quiet daydreamers and high achievers from being assessed. Much of ADHD happens on the inside: racing thoughts, overwhelm, the effort it takes simply to start a task, the fear of not being able to complete the task in question.
4.Isn’t it just an excuse?
A diagnosis is an explanation, not an excuse. Understanding why something is hard, lets us take responsibility in a way that works. Most late-diagnosed adults, like me, have already spent years blaming ourselves. We are experts with self-shame, guilt and self-criticism. Trust me, we most definitely don’t need help with that.
5.Why bother getting diagnosed at your age?
Because understanding ourselves, at any age, is never a waste. A big bonus for me was that I started to have more self-compassion and less shame. In my TEDx talk, I spoke about slowly and safely peeling back the labels that limit us. A late diagnosis can be part of that: a label that finally explains us rather than confines us. A diagnosis can open the door to treatment, workplace supports and, perhaps most importantly, a kinder story about one’s own life. It’s never too late to stop fighting yourself.
6.Have you tried a planner / getting up earlier / just focusing?
We have, believe me, we have tried every planner, every app, every tool known to mankind! Most of us adults with ADHD have a drawer full of abandoned planners and a long history of trying harder. ADHD isn’t a lack of effort or knowledge. Please remember that your unsolicited productivity tips, however kind, can increase our feelings of worthlessness and make us feel like you’re saying we just haven’t tried, even though we never stopped trying.
7.I’d hate to be on medication.
Whether to take medication is a personal decision, made between a person and their doctor. Sharing your opinion, especially in the early days after diagnosis, adds shame to an already complicated choice. If we want your view, we’ll ask.
8.Well, that explains a lot!
Someone said this to me with a laugh, and oh boy, did it hurt. Saying something like this can suggest that you’ve been quietly monitoring and recording our failings for years. For someone already replaying a lifetime of moments through a new lens, it can feel like confirmation of our worst fears about how others saw us. As I said in my TEDx talk, labels are how others see us, and they don’t always tell the full truth.
What to say instead
You don’t need the perfect words. You need curiosity and a willingness to listen. That was the heart of my TEDx talk, Living Beyond Your Labels: listening without judgment or criticism is one of the most powerful gifts we can give another person. Some places to start:
- Thank you for telling me. How are you feeling about it?
- That must bring up a lot. Is it a relief, or is it complicated?
- What has it been like for you, all these years?
- Is there anything that would make things easier for you?
- I’d like to understand more. Is there something you’d recommend I read?
And sometimes the most helpful thing is to say very little. Let us talk. Let us grieve, laugh, rage or wonder aloud. Being heard without being fixed or judged is rarer than it should be. The teenager I called Sean in my TEDx talk told me what helped him most when our work together ended: “You listened. You didn’t label me.”
A final word
A late ADHD diagnosis isn’t the end of a story. With the right support, it’s often the moment we finally get to rewrite our own story, with the right glasses on. The people around us can make that easier or harder. For me, one of those people was Mike, my lecturer, who listened as I put myself down and told me, “Eileen, you’ve got this.” So, I’ll ask what I asked on the TEDx stage: Is there a Mike in your life? Or better still, in whose life can you be a Mike?
If you’re the one who’s been recently diagnosed and these phrases sound painfully familiar, please know that your experience is valid. You were never lazy or broken. You did the best you could with the information you had. And remember the message of my TEDx talk: a diagnosis can explain you, but it doesn’t define you. You are not the label. You are the person underneath it.
If you’d like support making sense of a late diagnosis, I’d be glad to hear from you. If you’d like to hear more, you can watch my TEDx Tralee talk, Living Beyond Your Labels, here:
