"I knew it was bad when I came home from a funeral - and burnt all my clothes."

For 25 years, my life was a living hell.

I truly believed if I didn’t do everything perfectly, someone in my family would die.

On the worst days, when the alarm went off in the morning, I would begin to cry because I knew my day would be filled with horrible thoughts, panic attacks and hours and hours of rituals all carried out in order to protect my family. It was a nightmare.

I knew it was irrational, but that is what living with obsessive compulsive disorder (OCD) is like.

Around half a million Australians live with OCD, but it is still a highly misunderstood mental illness. When I hear people joke about having OCD because they like things to be neat and tidy, I always think, ‘if only you knew how debilitating OCD can be.’

The OCD slowly crept in with time. My symptoms got worse, year after year. When I was five, I felt a pressure to protect my mum, dad and two brothers. I only felt comfortable when everyone was home together and I knew where they were.

In primary school, if I made a mistake I would rip the page out and start again. I could not rub or cross it out. I was also starting to wash my hands more than usual. It wasn’t until I got to high school that the terrifying thought came to me – ‘If I don’t do everything perfectly someone in my family will die.’

Looking back, it’s heart breaking for a child to have such overwhelming worry.

By the time I was 25 years old, I was virtually incapable of doing anything without the assistance of my husband. Every action caused me to spend time checking, counting, washing or debating with my thoughts. It became so debilitating, my husband had to help me with getting dressed so I didn’t put something on the wrong way.

I was completely at the mercy of OCD. I felt like I was in a deep black hole and I had no way of getting out. The simple thought of having to leave the house would send me into a panic attack.

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My husband suggested I see the GP when I was 28 years old as he could no longer live the way we were living.

He had become involved in my rituals too, and it was affecting both of our lives. Once, while driving to Albury from Sydney, my husband and I made it half way before I started to fear the front door was unlocked. I began panicking, so my husband turned the car around and drove four hours back to Sydney, only to find the door was locked.

I would wake him up several times during the night to check the windows and doors and then I would re-check them.

My GP sent me to a psychiatrist who I visited weekly for two years. These visits involved talking about my compulsions and horrible thoughts. While I was getting worse by the day, she never once mentioned OCD.

It wasn’t until my husband came home one afternoon and said he had read a magazine story about people living with similar behaviours to me that I began to understand more about OCD.

We took the article to the GP and he referred me to the specialist from the article. This was the best thing that happened to me. I had three weeks of daily intensive cognitive behaviour therapy followed by 12 months of follow-up appointments.

LISTEN: Lily Bailey and The Secret Routines of OCD. Post continues after audio...

Part of the treatment involved confronting my debilitating fear of death. When the OCD was at its worst, I would come home from a funeral and burn my clothes because I thought if I wore those same clothes again, someone I loved would die.

On my first day of treatment I had to purchase a sympathy card. This might not sound like much for most people. For me though, if I saw a sympathy card, I thought someone I loved would die.

The next day I had to write on the card and send it to myself. Each day a new activity was added, including visiting funeral parlours, cemeteries and other places I had deemed were scary. This was to help me understand that I could not cause anyone else to die.

The treatment changed my life. I will be forever grateful to this psychologist.

These days, my life is completely different. I have a beautiful daughter and have been working in the mental health field for 21 years. I have a job where I hope I make a difference in people’s lives.

I get dressed, grab my bag, pick up my keys and walk out the door, locking it without checking — something I once wouldn’t have thought possible.

My only wish is that I had known about OCD and how it can be treated much earlier than I did. For anyone experiencing OCD symptoms, it’s important to know help is out there and that the symptoms are treatable. OCD is not a life sentence.

Visit www.sane.org/ocd for more information on Obsessive Compulsive Disorder.

Anyone looking for information, support and guidance from mental health professionals can contact the SANE Help Centre on 1800 187 263 or helpline@sane.org from 10am – 10pm AEDT.