These Adults Have ADHD But Were Misdiagnosed For Decades



ukhealthed


BuzzFeed News spoke to adults who have learned that they have
ADHD after being misdiagnosed for years, with life-changing
results.

Posted on September 13, 2017, 11:18 GMT

A noisy pub is not the ideal place to try out a new
medication. But the first time Sonja (who spoke on condition
we only use her first name) took a pill to treat her newly
diagnosed ADHD, the pub was the perfect location. With the
background music and conversation at the next table in full
flow, she tried to read a book. The noises around her might
have been minor frustrations at most for anyone else, but for
Sonja they would normally mean she was completely unable to
focus.

She couldn’t read books at all before – let alone in a pub.
“I would go through two pages and not have any idea what I
read, I’d be thinking of something entirely different.”

Her meds passed with flying colours. “I could actually focus
on multiple things at the same time,” she says. “I could hear
the music, I could hear some women talking at the next table,
and I would still be able to read what I was reading. I was
really alert.”

Taking the pill was life-changing. Sonja had always had
trouble concentrating, and often felt like she was in her own
world. She would constantly switch from one task to another.
“I didn’t really know what was going on with me, but when I
was young I just figured out that it was a part of my
personality,” she says of the symptoms she now knows to be
attention deficit hyperactivity disorder, or ADHD.

But ADHD wasn’t what doctors initially thought Sonja had.
Before being diagnosed with the condition, Sonja spent almost
a decade going to medical professionals. Since 2008 she’d
been given other diagnoses, including bipolar disorder and
borderline personality disorder, with the corresponding
antipsychotic medications, antidepressants, and therapy, but
none of it worked. Worse than that – some of the medication
made her feel like she was “in a coma”, and made her suicidal
thoughts worse.

ADHD is a neurological disorder that can make
people inattentive, impulsive, and hyperactive. But symptoms
can also include insomnia, emotional instability, a wandering
mind, getting side-tracked easily, and feeling restless. It’s
thought that ADHD affects around 3% of the adult population,
and research suggests the rate of undiagnosed
ADHD is 10% or more in patients attending mental health
services.

The trouble for many adults with undiagnosed ADHD is that it
can look like a lot of other mental health conditions,
especially when it’s severe. “What we’re discovering is that
with many patients, before ADHD is recognised, they have
already been given a range of other diagnoses and they’re not
always appropriate or correct,” says Philip Asherson, a
professor of molecular psychiatry at King’s College London.
“Some of the most common ones are personality disorder [and]
bipolar disorder, and the other common ones are anxiety and
depression.”

Sonja is not alone. Three other people BuzzFeed News
interviewed said they struggled, two for decades, with mental
health issues they believe stem from untreated ADHD that
doctors didn’t spot. They talked of failed exams, piles of
unopened letters, broken relationships, and lost jobs that
they believe are down to ADHD that they weren’t given the
right help for. They all have in common several other mental
health diagnoses and a string of medications that at best
just didn’t work, and at worst could have been dangerous.

The people we spoke to – all adults – are a relatively new
kind of case for the medical establishment. Adult ADHD was
only recognised by the National Institute for Health and Care
Excellence, or NICE, in 2008. “It’s not so much the
difficulty in making the diagnosis, it’s that adult mental
health is still relatively new to this condition, so often
the expertise and the knowledge is relatively lacking,” says
Asherson, who is also president of the UK Adult ADHD Network,
which aims to help mental health professionals who work with
adults with ADHD. “I think that’s a big problem.”

Last week NICE published a draft update to its guidelines that
urged doctors to “be mindful” of people
who could have ADHD but often get overlooked. It particularly
mentioned women and girls who may not display “classic”
symptoms and people with other mental health conditions.

Some people do have those conditions in addition to their
unrecognised ADHD. But for others, the ADHD just looks like
something else.

Gareth Gregan, a recent graduate of Trinity College Dublin
who now lives in London, says his previous diagnoses of
anxiety and depression were “like a jumper that didn’t fit”.

Gregan got through school just fine, but when he reached uni,
things started to fall apart. He failed two consecutive
years, where previously he’d been getting top grades. “I’d
sit exams in May, fail them, resit them in August, and fail
them again. It was like this cyclical process that wasn’t
actually going anywhere.”

He soon got diagnosed with anxiety and depression. “I was
going down a very destructive route. I was getting very
depressed because I didn’t know what was wrong with me, and I
wasn’t able to put any structure or organisation into my
life. I couldn’t imagine [what would have happened] if I’d
continued down that road for another 25 years.”

The medications he was put on to help the anxiety and
depression did make a difference, he says. “They stop the
bleed, but without ever addressing the underlying cause of it
themselves. They were a beneficial short-term solution to get
me out of a slump. But I didn’t actually need to stay on them
at all once I got diagnosed with ADHD.”

“I wouldn’t be here if I hadn’t got that diagnosis. God knows
where I’d be.”

To get the diagnosis Gregan saw a psychiatrist, who referred
him to a psychologist. The psychologist gave him tasks like
organising blocks, or circling places on a map, that he had
to complete both with and without a beeping noise in the
background. With the beep, he fell apart. “I’d just throw all
the blocks up in the air and be like, ‘I can’t concentrate on
that,’ because the bleep noise was such a distraction,” he
says.

When it finally came, his diagnosis felt like “turning on a
light switch”, he says. He had some exam resits in May 2016,
shortly after starting treatment for ADHD, and they went
well. “I had the experience of coming out of exams after
actually having been able to study for them like a normal
student.”

Gregan thinks his anxiety and depression were symptoms of his
untreated ADHD. Now he’s on Ritalin, and it’s working. “It
gives me the ability to focus on a particular task,” he says.
“Instead of being like, ‘I have 20 things to do and I’m going
to try and do them all at once,’ it’s like, ‘No. I’m going to
sit down and send this email, then I’m going to do this
lecture, and I’ll do this homework afterwards.’”

He thinks adults with ADHD fall through the cracks because
people assume if you have the condition you’ll get diagnosed
with it as a child, or that you’ll grow out of it anyway. He
also thinks some people don’t view ADHD as a “real thing”.
The public discussion around ADHD “did dissuade me from
looking for a diagnosis,” he says, “because I thought, Oh,
that’s not much of a real thing.

With his diagnosis and new meds, Gregan managed to finish his
degree and get an internship in London. “I wouldn’t be here
if I hadn’t got that diagnosis,” he says. “God knows where
I’d be.”

Getting the wrong diagnosis – and treatment for it – can be
frustrating. It can also be dangerous. “The risks of a drug
are normally outweighed by the benefits,” says Asherson, “but
if there aren’t any benefits then it becomes all risk. They
might get put on antipsychotics to calm them down, and have a
lot of side effects.”

Even putting a lot of time into something like cognitive
behavioural therapy that’s not working for someone can have a
negative effect. “People don’t talk much about risks, but
spending a lot of time and effort in something that really
isn’t going anywhere might be quite difficult for somebody,”
he says.

“The risks of a drug are normally outweighed by the benefits,
but if there aren’t benefits it becomes all risk.”

It’s not unusual for people with ADHD to develop low
self-esteem. “Because they’re just constantly struggling and
finding things difficult and then they start to feel quite
bad about themselves,” says Asherson.

Last year Asherson published a paper in the journal Lancet Psychiatry
arguing that a failure to recognise and a lack of resources
needed treat adult ADHD is hurting people who seek help for
mental health problems. “Treatment of adult ADHD in Europe
and many other regions of the world is not yet common
practice, and diagnostic services are often unavailable or
restricted to a few specialist centres,” he and his coauthors
wrote. “This situation is remarkable given the strong
evidence base for safe and effective treatments.”

The stereotypical image of a boisterous kid acting up in
class doesn’t carry over to adults who have ADHD. A lot of
the symptoms in adults are ones you see in other conditions:
“They can’t concentrate well, they don’t sleep very well, and
so all of that is part of anxiety and depression; they maybe
have difficult social interactions, which makes you think
about personality disorder; and their moods tend to swing
around a lot, and that makes people think of bipolar,”
Asherson says.

And there are other symptoms too, he says, that people might
not immediately link to ADHD, like emotional instability.
Specialists know this, he says, but it’s not part of the
clinical criteria for the condition. That means that while
someone well-versed in spotting and diagnosing adult ADHD
might recognise that someone who’s emotionally unstable could
have the condition, GPs and other health professionals who
are less familiar with ADHD are not likely to make the link,
and will probably assume emotional instability is a symptom
of something else – such as borderline personality disorder.

One of Asherson’s projects looked at patients who were
diagnosed with borderline personality disorder. “What we’re
finding is that around a third to a half meet ADHD criteria,
so that’s a huge proportion,” he says. For some of those
patients, he says, ADHD will be the main problem, and
treating it will be a huge help, like it was for Sonja.

But that won’t be the case for everybody. Even after treating
possible ADHD symptoms, some people don’t get better. “We
also know that you treat some people like that and they don’t
get better, and it turns out that there are probably a range
of problems,” says Asherson. “And ADHD doesn’t always respond
to treatment.”

Years without a diagnosis can make life agonising. When Sonja
moved to London from her native Finland in 2006, she started
noticing more severe problems and couldn’t keep hold of a
job. “I was working in a clothing store, that’s the last job
I’ve had for a very long time,” she says. “When I was made to
stand and be quiet, watching to make sure people didn’t steal
stuff for two hours, it was like torture to me, I just
couldn’t do it. I was coming up with excuses like ‘I have to
go to the toilet,’ ‘I have to go do this.’ I just had to
move, I couldn’t stand there.” Then she started getting more
anxious and having problems with food. “I couldn’t breathe,
and I started eating stuff like five burgers or five packs of
cookies, then I would throw up all the food I was eating on
my break. I was doing that to have a release from what I was
feeling.”

Eventually she was sacked, and later that year her father
died. She went to see her GP and told them she was really
worried about how she was doing. They referred her to a
specialist, and that’s how, in 2008, her first label arrived:
bipolar disorder, alongside anxiety and panic attacks. She
was given “all kinds” of medications, but didn’t get on with
them.

“I was taking them for a while and they made me really just
tired, like I wasn’t even existing, like a dead person
really,” she says. “I couldn’t lift my head, it was weird.
That was so frightening to me that I stopped the medication.
I couldn’t do anything. It made my suicidal thoughts worse.”

“Anxiety and depression have stemmed from my inability to
have a quiet mind.”

Sonja struggled on for years, eventually changing to a new GP
who told her they had no record of her bipolar disorder
diagnosis. She explained her symptoms: constant fidgeting,
and not being able to focus, sit down for more than five
minutes, or finish tasks, as well as anxiety, depression, and
suicidal feelings. Then came a new diagnosis from a different
specialist: borderline and narcissistic personality disorder,
for which she started year-long schema therapy in November
2015. (Schema therapy is a type of psychotherapy centred
around patterns of thoughts or behaviours, often used to
treat personality disorders.)

It was only by chance that, in a waiting room when she was
halfway through that therapy, she spotted a note on the wall
asking people who’d been diagnosed with borderline
personality disorder or ADHD if they were interested in
participating in research. She went for it. “I thought maybe
I could learn a little bit more about myself, and maybe I
could help some people,” she says.

She went along to take part in the project run by Asherson’s
team at King’s College London, answered the researchers
questions, and took their tests. Later an email from the
research team landed in her inbox saying that they believed
she had ADHD. “I started reading more about ADHD, and during
that process I realised a lot of anxiety and depression have
stemmed from my inability to have a quiet mind – my mind was
always chattering to me,” she says.

That was in January this year. After discovering Sonja’s
ADHD, Asherson prescribed her Concerta, a drug containing
methylphenidate, a central nervous system stimulant and the
active ingredient in the more well-known ADHD drug Ritalin.

“I was so fearful because I had been given all these
different diagnoses before, and all these medications,” she
says. “I thought, Now I have another diagnosis on top of
all of these other things, and what is this going to make me
like?
” But it worked. “I took one of those tablets and
immediately I just felt much more drawn into my thoughts. It
was really amazing. I couldn’t feel my anxiety and
depression, I couldn’t feel those emotions. I felt elevated
and excited and hopeful.”

Jeff Gawthorpe, now 44, who lives in Leeds, also struggled
his way through university with untreated ADHD. He had a
breakdown at 21 that resulted in him sleeping at the end of
his parents’ bed on a camp bed. “The whole world came in on
itself,” he says.

“It just all came on top of me because I realized I was an
adult, and I just couldn’t cope in an adult world at that
point, I just couldn’t organise myself, and it led to me
being overwhelmed.”

Between then and now he’s been diagnosed with depression
several times, and been on “virtually every antidepressant
there is, but it’s made no difference,” he says. Now he
thinks that that breakdown, and subsequent mental health
issues, “almost certainly” stemmed from his untreated ADHD.

“The best thing I’ve ever done for myself is getting
diagnosed.”

He compares his brain without medication to a classic cartoon
sketch of someone trying to stuff more and more into a
suitcase, with things bulging out the sides. “That’s what my
brain used to be like. There was only so much that would fit
in there, and it wasn’t enough. If there’s not enough space
it doesn’t go in, it just disappears into the ether. You know
it’s disappeared but you can’t quite remember what it was,
and that causes anxiety. You can’t keep on top of things, and
it’s just a vicious circle.”

Gawthorpe is divorced and thinks his untreated ADHD is partly
to blame. “This is another one of the consequences of not
getting treated – it really affects relationships and makes
things difficult both for the person with it and their
partner, because the partner thinks you don’t care, you’re
not listening.”

Running a household by himself has been a challenge. Even
with medication for his ADHD he struggles with some things,
like keeping on top of house admin. “I’ve got letters going
back three years that are unopened,” he says. He’s also had a
car sitting on his driveway waiting to be sold for the past
18 months. “It’s like a millstone round my neck, but the fact
of getting everything together and doing it is so
overwhelming I tend to put things like that off. You wake up
and blame yourself every day for it but you still don’t do
anything. It’s bonkers.”

Overall he’s seen a huge improvement since getting the right
treatment. “Work is far easier now. I’m much more together
and focused and able to concentrate at work, which was one of
the main things I had a problem with before.

“The best thing I’ve ever done for myself is getting
diagnosed. It’s a lot better than it was before, but it’s not
perfect and it probably won’t be perfect ever.”

He wishes more people knew that ADHD isn’t just about not
being able to sit still or concentrate, but rather affects
someone’s whole life. “Everything in your life is affected by
this condition that a lot of people see as trivial, and it
needs to be treated with more seriousness by the NHS. It
needs to be funded better.”

GPs can’t formally diagnose ADHD, so if they suspect someone
has the condition they have to refer them to a specialist for
an assessment. Gawthorpe himself shelled out around £2,000 to
get diagnosed privately and to find the right medication
after his GP told him he’d need to wait six to nine months to
get a diagnosis on the NHS. “Not many people with ADHD are in
a position to pay that,” he says.

Beverley Bennett, who lives in Hull, was also in her forties
when she finally was diagnosed. “When you get to your forties
and find out that your brain processes things in such a
different way to the general population, it’s a surprise,”
she says. She’d accepted that she was “odd, eccentric, didn’t
fit in”, but thought those things were just part of her
personality.

After the diagnosis, she felt relief. “Suddenly everything
made sense and I thought there was hope.”

Over the years she’s been treated for depression,
depersonalisation disorder, emotional instability, and
possible personality disorder. “I tried loads of
antidepressants, but only one seemed to have any effect,” she
says. She doesn’t necessarily think she was misdiagnosed, but
that her obvious ADHD traits were not picked up in addition
to her other conditions over many years of using mental
health services.

“My inability to make friends and consequent loneliness was
making me depressed,” she says. “My lack of motivation led to
frustration and anger and that made me depressed. I
experienced anxiety over unusual things and became
overwhelmed easily and found it difficult to concentrate. All
of these things can cause, present as, or exacerbate
depression.”

She’s been fired from jobs because of difficulties arising
from her ADHD, like misunderstanding instructions, or coming
across as rude or blunt because she often speaks without
thinking. Her current job is the first one since she was
diagnosed, and she’s made her employers aware of her
condition. So far they’ve been supportive.

But as Bennett discovered when she moved from London to Hull,
a diagnosis doesn’t always mark the end of struggling to have
your condition understood. Despite her consultant
psychiatrist in London writing a letter to her new GP
recommending she continue to see an ADHD specialist and get a
treatment plan, she says she has since been refused treatment
for ADHD and is not currently on medication for any mental
health issue.

“I tried to explain that my emotional instability and social
difficulties were due to my ADHD, but [the psychiatrist]
didn’t seem to understand,” she says. “He wanted to treat
these as separate ‘illnesses’ before treating my ADHD.”

But her move has only convinced her more that ADHD is
underlying many of her problems. “When I moved house a couple
of years ago, I found a lot of my old notebooks and it was
noticeable that I had been describing the same things for
years. I now know that these feelings and difficulties are
typical of ADHD.”

In fact, the doctor who diagnosed her with ADHD in London had
read some of her medical notes from the 1990s and used them
in his decision. “He said that it was these notes that
convinced him that I had ADHD, it was just that the
psychotherapist [at the time] was not looking for it.”

“All I care about now is that this medication has worked.”

The updated NICE ADHD guidelines will be published next year
and are intended to help prevent adults who are at higher
risk of having ADHD being overlooked. Asherson thinks the key
to fewer misdiagnoses is wider understanding of the fact that
adult ADHD exists, and what it looks like. “People are
[becoming] more aware of it, there are many more clinics,
more people are being picked up and recognised,” he says.
“But there’s still a big gap. A lot of people are very
frustrated because they’re not being treated, they’re being
put on waiting lists. It’s improving, but it’s still a long
way to go.”

Sonja is still waiting on a referral to a clinic that treats
adult ADHD in London to make sure she continues to get the
right treatment. She says she doesn’t believe she has bipolar
disorder, and, although she doesn’t like the narcissistic
label, she’s not sure about her other diagnosis of borderline
personality and narcissistic disorder. She’s mostly just glad
to finally be on a treatment that is helping. “I don’t know
really to be honest if [the previous diagnosis] matters to me
so much – all I care about now is that this medication has
worked.”


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