What having OCD is really like – Business Insider

Rawson-Harris / Unsplash

  • About 1.2% of the population have Obsessive Compulsive
    Disorder, or OCD.
  • There are many misconceptions about having the
  • Stephen Smith, founder of nOCD, aims to help spread
    awareness of what it’s really like.
  • The app connects people with specialists and shares
    information on OCD.
  • nOCD currently has a community of about 80,000 people,
    and it’s growing.

When Stephen Smith was in his sophomore year at college, he was
on the football team, and working towards a degree in Economics
and Chinese. Then, something took a turn.

“I was a starting quarterback at my school, living the life,
everything was going perfectly,” he told Business Insider. “Then
there was a huge collapse. Basically I wasn’t able to leave my
house — it was a very bad time.”

Smith was diagnosed with Obsessive Compulsive Disorder (OCD),
which, according to the World Health Organization
, affects about 1.2% of the population, 

OCD is ranked in the top ten of the most disabling illnesses of
any kind, in terms of lost earnings and diminished quality of
life. But many people still don’t really know that much about it
as a condition.

Smith wanted to change this, and
so he set up nOCD
, an app which helps people with OCD seek
out experts for advice and treatment, connects them to others
with the disorder, and collects their data at the same time.

In less than a year, nOCD has amassed a community of more than
80,000 people who can talk to and help each other. They can also
submit information about their own diagnoses and treatments which
are used for research into the condition.

“We can help make a better ecosystem for them and a better future
for them,” said Smith, who is very familiar with how isolating
OCD can be. “Short term, we can provide content; long term, we
provide knowledge to help create treatment of OCD.”

There are many misconceptions about OCD, including exactly what
it is and what the symptoms are.

Smith told Business Insider what it is in his own words, and what
he wants people to know and understand about what it’s really
like to live with.

You have endless obsessive thoughts

Smith said having OCD is a bit like having a song stuck in your
head, but that song creates anxiety, and never goes away.

“You have these recurring thoughts that you can’t get out of your
head,” Smith said.

“But it’s a little bit more personal than [a song]. You have
these extreme fears that you can’t get out of your head, so to
get them out of your head you do specific actions, called
compulsions. The problem is, by doing those actions, you
essentially make the fear grow stronger and stronger.”

The fears people experience are so severe, Smith says, it can
make their chest tighten, throat close, produce dizziness. The
treatment to combat this is a form of cognitive behavioural
therapy, which helps people resist acting on these compulsions.

“The whole principal of OCD is you want to learn to accept
uncertainty,” Smith said.

“So people with OCD are often not willing to accept
uncertainty… An example is somebody who fears they are going to
hit someone while driving, so they start driving and getting
anxious, thinking what if I hit somebody, or did I just hit
somebody by accident?

“Then they will go back and check that they didn’t go and run
over somebody, and basically in that process they’re reassuring
themselves that they didn’t hit someone and they’re ok.”

The more the person goes back to check, the more they are
reassured. But that also means they are reinforcing that fear and
it will come back stronger. Smith said it’s like picking at a
scab — you know you shouldn’t, and it gets worse the more you do
it, but you can’t stop.

The treatment basically aims to get people to the stage that the
fear doesn’t bother them anymore.

hiding hole
Ratushny / Unsplash

It’s nothing to do with cleanliness

A common misconception about OCD is that people with it like
things to be clean. You might have heard people say they are
“OCD” about things, because they like to have everything in
order, no mess on their desks, and their kitchen is spotless.

But that’s not really what OCD is about. Someone might have the
specific fear that something bad will happen if they don’t keep
clean, and so they obsessively tidy up — although that’s not
something everyone with the disorder experiences.

“People with OCD have very specific fears,” Smith said. “For
example, someone may have the fear ‘If I leave my room messy I
could get sick and die.’

“So the fear is getting sick and dying, and to prevent that
coming true, they are always clean. But the reality is the reason
why they are cleaning is they are trying to prevent their fear
from coming true.”

It can take a long time to find the right treatment

Cognitive behavioural therapy for OCD works very well, with
people gaining good control over their fears, and learning to not
reinforce their compulsions.

But Smith says that because the condition isn’t widely well
understood, people aren’t always pointed in the right direction.

“The problem is it can take 14 to 17 years to find an effective
treatment, which is ridiculous,” he said.

“The WHO ranks OCD a top-10 disorder for loss of income, because
people are so crippled by it they can’t work. So we think this is
an incredible opportunity to help a huge section of the
population worldwide.”

This is why he wants people to be aware of the real symptoms. The
longer someone has been suffering with the symptoms of OCD, the
longer it will take for the treatment to work.

Smith said that if people can recognise the signs early, then it
can be treated pretty quickly and effectively.

“If there’s a great deal of awareness of OCD in society, if
someone’s saying ‘I can’t get this song out of my head and it’s
giving me tons of anxiety, I have incredible fear torturing me,’
you better know that’s OCD,” he said.

It’s not obvious, and people often think, ‘I don’t know what’s
wrong with you, I have no idea.'”

The goal is to get awareness of OCD to a place that is comparable
to other mental health conditions which are better understood.

For example, if someone says they are feeling down all the time,
or they can’t get out of bed, they are fairly quickly diagnosed
with depression.

“Once that awareness exists, you’ll see a lot of people coming
forward for treatment because they’ll know where to turn,” Smith

The wrong treatment can be very harmful

Misdiagnoses do happen, and if a patient is told to give into
their compulsions instead of resisting them, that makes the
anxiety escalate.

But it’s not just the doctors. The families of people with OCD
can also make things worse if they don’t fully understand the

For example, the logical thing is to find an answer if someone
has a fear. If a child is scared of the dark, you can simply turn
on the lights and show them there are no monsters there. But with
someone with OCD, those answers will never be good enough.

“The brain isn’t structured in a way that they can find answers
that stick,” Smith said. “It’s like throwing something against
the wall and it sliding down — nothing will ever stick.”

Ideally, through the work of nOCD and increased awareness of OCD,
the truth about it will be common knowledge.

Until then, the best thing families can do, Smith said, is help
that person find an OCD specialist. There are organisations like OCD UK that can help people
connect with doctors who thoroughly understand the condition.