The reality of living with undiagnosed and unmanaged ADHD

Many of are diagnosed as adults, many in mid-life and older, having lived with the chaos and deficit that ADHD can bring for many years

If you missed the first newsletter, check it out first: What exactly is ADHD though?

And here is the intro to what I aim to do here: Welcome to Runaway Brain - Understanding ADHD & Neurodiversity with enthusiasm, knowledge and self-compassion

Note in advance: I aim not to indulge in the pervasive negativity surrounding ADHD in general, because that is truly not what we are all about and it should not be dominant. That is mostly stigma. That is what many of us want to change! However, in setting this up, we have to dwell in it a little occasionally, so please bear with me.

Many people who have ADHD have no idea, until the wheels come properly off, as they usually do, eventually and persistently. We notice that things that are hard for us appear easy for others, and that it isn’t normal. It seems to get harder too. We become weary, and often depressed. It is so hard to stay motivated when you keep trying, and eventually, always, seem to fail.

Then we begin to understand that, yes, something is definitely up and maybe it is quite serious. It can take quite a long time to get to the moment of realisation, and more importantly acceptance, that ADHD is at play. For me it was a few years from that penny first dropping when I first read about another woman’s experience of ADHD. A few years of wasted time. It was unnecessary.

Am I losing my mind? I think I might be!

I have seen stories of undiagnosed ADHDers going for MRI scans in their 40s because they fear that they have some kind of dementia. I can relate.

When you are experiencing burnout, which you will eventually if you are masking furiously and coming up against neurotypical walls all day long, it really it doesn’t feel like your brain is working well at all.

Words escape you, you forget what you were doing all day long, you can’t focus. You forget names of people you know well in conversation. You are so very tired. You may start to cancel social engagements, and spend much more time alone. You may socially disconnect yourself.

You can feel distressed because this is not who you are. You have always been whip smart, most likely. Maybe top of your class, progressing through your career with speed.

Maybe you always struggled with education but you knew you were capable of so much more. You absolutely feel that you have potential and you fear deeply that you will never be able to realise it as time slips through your fingers.

What is happening?

This can go on for years if you don’t take it in hand and start to accept and see that the barrier facing you is the stigma surrounding ADHD. Stigma is harmful and pervasive. We need to erase it. We can do this by talking about our experiences and sharing more.

The maze of misdiagnosis

After years of misdiagnosis (or just not being seen), we finally figure it out as we read about other people’s experience of late diagnosis, usually, and finally, everything makes sense. When we are ready to accept it. Those misdiagnosis are most commonly anxiety and depression, bipolar or EUPD (formerly known as BPD).

It is complicated because you can also have all of these things alongside ADHD. Comorbidities are common. But often, once you treat the ADHD, those things can disappear or at least be dramatically eased. Because they were never there alone, they were caused by your ADHD.

The symptoms were manifestations of the struggles of trying to exist in a world that makes little room for us. That compresses us, insists that we dial ourselves down, insists that we stay quiet, stay still and stop distracting all of the neurotypicals around us. (This usually means we are in the wrong job!).

Almost everyone who finally figures out they have ADHD (and it is finally for many of us, especially women and anyone with an inattentive component), has had a life dotted with struggles that made no sense to those around them or to themselves. Yes, their whole lives, through childhood right up to now.

How can you be so smart and still so all over the place? I don’t know (blush of shame), but do you know where my phone is? No, shall I call it? No point, my phone is always on silent because my phone drives me crazy and stresses me out when it rings. And on it goes.

ADHD is different for everyone with commonalities

ADHD is not a one size fits all, but there are a lot of commonalities. How you experience your ADHD deficit entirely depends on how much support you have in your life too. The same goes for your ADHD strengths. Remember, when I say ADHD, you should really just think of your brain.

So maybe you have a partner who is very organised and into tidying? Who sorts out all of the bills and life admin? You may not even notice it at all. Perhaps you have an assistant at work who manages your schedule and the drudgery? But if you live alone or have little support, or have a lot of organisational work to deal with on a daily basis, you will absolutely feel it bite you, all day long.

Most of us figure this out when the organisational demands of our lives exceed our organisational capacity. Whether that is because we leave home to go to university, leave a relationship, change job or have a baby. There are many things that could precipitate it.

ADHD and our experience of our bright brains is all tied into which bits of our brains work the same way. The same way for us ADHDers, and differently to everyone else, particularly neurotypicals.

For me, the hard things never seemed difficult. Everyone would say I was brave, where I was really just not afraid of the same things. I love a challenge and a big meaty project, getting lost in a big strange city on my own. ADHD brains like to be stimulated, are often impulsive and have a different view on the world.

Easy things are hard and hard things are easy

The easy things though, the easy things for everyone else, why were they so very hard for me? Why can I never remember to do my laundry or take it out of the machine? WHERE IS MY PHONE? Why can I never find my passport? Why does time always escape me? Why do I forget important appointments?

Internalised negative messaging

As with many in my position, I internalised all of the negative messaging that had been directed my way because of my ADHD brain refusing to conform, no matter how hard I tried. This is a big problem for people with ADHD in general.

People in your life regularly become upset with you because they think that you don’t care or they think that you are lazy. That in turn is very upsetting because you actually care a lot. You don’t think you are lazy, you just forgot. It wasn’t personal, it wasn’t intended to distress. It’s just that you can’t move or motivate yourself sometimes.

It’s like being stuck in treacle some days.

It is estimated that those with ADHD receive 20,000 more negative messages by age 10 than they do positive messages. They view themselves as fundamentally different and flawed. They are not like other people. — William Dodson, Psychiatrist, Additude Magazine

Tuning out

You may find that you tune out when someone is talking to you because your brain wanders somewhere else while they do. The panic as you realise and try to claw your way back in and catch up! At work you might tune out in meetings and come back into the room only when you hear someone call your name, asking you a question.

Actual terror as you try to figure out what the question is about. We become very adept at getting out of these situations.

Other days, you are running the meeting and everything else like the best gold star employee, absolutely on top of it all. It is confusing for everyone. Again, people often think you are deliberately checked out and that you just don’t care because they have seen you when you are so very capable.

Then comes the MASKING!

We don’t even know we are doing it. Women and girls especially learn to do this very young. Masking means presenting the face that society wants to see, rather than the face you actually own. Society insists that women and girls behave a certain way, and is far less flexible than it is with men and boys (I am in no way saying that life is easy for men and boys with ADHD, it is just different, and in many ways, just the same).

We adapt to the situation we are in, presenting the face that will get the best response. We are very good at this because we are very empathetic and very good at reading the room. Not just good at it, we always do it and we can’t turn it off.

You are masking so well you even believe it yourself! That is what most people don’t understand. You are actually deceiving yourself also. Hey! Look at how together I am!

You mask all the time at work and socially, but mostly not at home, if your home life is comfortable and you can be yourself. At home you are mostly your full self unless you are triggered by shame relating to your ADHD deficit or similar. Most of us feel a lot of shame.

Tired and messy and pressured and always behind because you have prioritised everything and everyone else, you are usually exhausted when you get home. Not least because most ADHDers don’t sleep well, but also because it is exhausting suppressing so much of yourself all day long.

That takes a toll on your relationships and your mental health. When you relationships suffer, that also takes a toll on your mental health.

At this point it starts to feel like an inescapable closed loop of being you and never seeming to be able to get on with things. Combine this with the BIG ADHD EMOTIONS and the turmoil is very real.

Guilt and shame and feeling stuck is a corrosive trifecta

This conflict and the ADHD stuckness combines with the guilt and the shame, and before you know it you have anxiety and depression. It has been building for years as your self esteem gets chipped away bit by bit every day. It has been appearing in patches, but now it is here pretty much all the time.

It’s because I am messy. It must be because I am lazy (but I don’t feel like I am!). It’s because I am disorganised. I am definitely disorganised. I don’t know why. I can’t seem to change it. I don’t want to be like this. I am so ashamed. I want to change. I can’t seem to.

Always trying, ever optimistic, ever crashing off the rails

I would establish good habits, smoothie in the morning, cycle to work, eating well. Then every few now and then the wheels would come off. Usually when I stopped cycling.

I didn’t understand how important exercise is for me, because I did not realise that I had ADHD. I can also now pinpoint those periods of burnout to the immense amount of energy that masking takes, and that is not sustainable.

Nor is being disconnected from yourself for the comfort of others. You also become disconnected from everyone else because when you are not being yourself. People sense it. It limits intimacy in friendships and relationships. You become isolated even when you are surrounded by friends.

Masking becomes harder as you get older. It starts to corrode. Everything becomes harder. Your work will be affected. Your home becomes more chaotic and this creates problems domestically. Undiagnosed ADHD can be a nightmare for relationships as living with someone’s undiagnosed and unmanaged ADHD chaos can be very difficult.

Edit: I can’t believe I forgot to mention the financial problems many of us face, these are very real, and extremely stressful!

The emotional turbulence, the low self esteem, the anxiety. Of course, there is the other side. It can be and often is great fun, and it is rarely not interesting.

The chaos becomes overwhelming, physically and mentally

If domestic chaos is core to your ADHD like it is for many of us, before you know it you are terrified of anyone coming to your home, because it is absolute chaos in there. On average, by the time women are diagnosed with ADHD in mid-life, it has been 6 years since they had anyone around to their home socially. It was exactly this long for me.

Hoarding can be an issue. Especially if OCD is comorbid (and it often is, OCD is wildly misunderstood and stigmatised also). This, combined with the general feeling of overwhelm that travels alongside undiagnosed ADHD, becomes unbearable.

When you go to anyone else’s home you are so anxious that people will think you are messy and disruptive that you are like the house help (or is that just me?). I love to cook and I am good at it and so I always put myself in the kitchen and cook for people. It is a safe space and I am so happy there. When I cook or create I am calm and in the zone.

Maybe you are the kind of ADHDer who is obsessed with order?

Or maybe you are the other kind of ADHDer who is so anxious about mess that you spend all your time and energy keeping everything in order? It blew my mind to find out that you exist, but also, it is not that big a surprise.

Did I tell you that we love a tangent? Here is another massive ADHD giveaway for you. Meandering stories, veering off the point, jumping into another story, eventually coming back. Forgetting what the actual story was and maybe never telling it. Interrupting others as they talk because you know you will lose your thread of thought any moment now.

Remind me, what was the question? Oh, sorry, I have lost my thread. What was I talking about? Sorry for interrupting!

Yes, it’s all true.

For women, your hormones are involved

Female hormones have huge impacts on ADHD monthly and over the life cycle. Many women get diagnosed in menopause because menopause can make ADHD much worse. Pregnancy impacts ADHD, puberty does too. Everything hormonal impacts ADHD because our hormones also interact with dopamine, just to start. I will go into more detail on this later on.

You don’t need a diagnosis, you are doing ok?

Why should you get a diagnosis when you have managed to get this far and you are just fine? You have coping mechanisms, you have figured it out.

Is any of this just fine? It isn’t really. It isn’t normal. It is just normal for us now.

Those coping mechanisms could be harming you. You could be learning better ones when you understand your ADHD brain better and when you can manage it better. The coping mechanisms that we developed when we were 6, 9, 12, 15 are not suitable for us now. They no longer make sense, even if they served us at the time.

It gets harder too as you get older. The masking becomes more difficult. The cracks appear. You relationships will likely be affected, your self-esteem will bottom out. Your mental health will suffer. ADHDers have higher rates of divorce, suicide, depression, eating disorders, addiction. Just to start.

Women don’t need to wait until menopause precipitates an ADHD crisis, while you are also dealing with menopause. You can deal with it in advance and be better prepared for anything that menopause might throw your way. (I can’t comment on this personally yet but I do have friends going through it).

Undiagnosed and unmanaged ADHD can take an enormous toll. It doesn’t need to.

If we acknowledge it, learn to manage it, learn about the positives as well as the deficit, we can spend a lot more time with the ADHD good stuff.

There is a lot of that!

Things can be so much better, even if it feels ok now

Even if it feels ok now, I promise you that it can be so much better. Our ok is not normal.

An ADHD diagnosis is not just about medication (which is a choice, and not for everyone, although I would encourage at least trying it, even just to get back on your feet).

An ADHD diagnosis, your ADHD diagnosis, is about self-knowledge, self-acceptance and embracing your whole fabulous ADHD self.

It is about learning to live with your brilliant brain, acknowledging all of the bright things, the fabulous things, the things that very much make you who you are even more than the deficit. The deficit is just along for the ride. A distraction. It is not definitive of you. It just distracts.

The good stuff, that is who you are.

We can learn to live with the deficit too and understand that these are not character flaws, it is just biology. With that knowledge we can empower ourselves to make much better choices in our lives. We can build a life that is much more fulfilling. That is happier.

We can change our worlds, and we deserve that.

We will!

Next: What does an ADHD diagnosis involve? And how do you go about getting one?