Parental guidance

This week's post is the first in a series of interviews with people who are able to offer a different perspective on obsessive-compulsive disorder. Today's guest is Janet Singer*, who lives in the USA and whose son, Dan*, now 24, suffers from the condition.

At what age, and how, did you first realise that Dan had a problem, and how soon after this was he formally diagnosed as having OCD?

I didn't realise Dan had a problem until he told me he had OCD, at the age of 17. He had diagnosed himself with help from the Internet and, shortly after that, his longtime paediatrician confirmed this. I had noticed Dan had been having trouble sleeping, and seemed anxious, but I attributed it to the fact that he was waiting to hear back about college acceptances. His compulsions were mostly mental, so were easy to hide. Of course, in hindsight, there were signs.

OCD takes many forms - what were the Dan's key obsessions and compulsions?

Dan's OCD centred on harming obsessions, as far as I know (he was never comfortable sharing the details with me or my husband): fears that he would somehow hurt, or be responsible for harm being caused to, those closest to him. I believe he also feared hurting just about anyone he came into contact with.

His mental compulsions included reviewing the day's events in his mind and counting. Overt compulsions included tapping and touching. Ultimately, what nearly destroyed him was avoidance: avoiding people, places, situations etc. At his worst, he was unable to eat, and would get 'stuck' in one place, physically, for hours on end.

How easy was it to access treatment, and what hurdles did you and your son encounter on his journey to recovery?

Like so many others who seek treatment for OCD, we were originally steered in the wrong direction. Access was easy (the 'local' clinical psychologist); unfortunately it was the wrong treatment! This therapist told us Dan's OCD was 'no big deal' - this was before it got really bad - and used traditional talk therapy with him. Dan had about 10 sessions of the wrong treatment before he went off to college, 1,500 miles from home. When his OCD became severe there, he saw a psychiatrist who prescribed his first medication.

In total, Dan took 10 different meds on his journey to recovery, but, for him, the best medication turned out to be no medication at all. We only learned about exposure and response prevention (ERP) therapy when he was accepted into a residential treatment programme for OCD. They knew how to treat the condition, but this programme presented other hurdles, such as lack of communication with me and my husband, as well as Dan beginning to become institutionalised, ie too dependent on the programme. We ended up forcing him to leave, which, in retrospect, was the right decision.

As a parent, what were the hardest elements of Dan's condition to deal with?

Before I understood what OCD was all about, I would inadvertently enable Dan. Once I realised that this only made his OCD stronger, I stopped, and at first that only added to his torment. That's hard for a mum; I was supposed to make everything 'all better', not worse. For me, the hardest part of Dan's ordeal was just seeing him suffer, and not being able to do much about it except tell him that I loved him and was there for him.

His relationship with me also became strained when he was on the residential treatment programme. He was there for nine weeks and I felt very isolated from him.

Image courtesy of David Castillo Dominici/FreeDigital Photos.net

Does anybody else in Dan's immediate family suffer from OCD, or any other anxiety disorder?

There have been no official diagnoses, but we 'have anxiety' on both sides of our family. I was an anxious child and even had a few 'OCD tendencies', but I never developed the disorder. The more my husband and I think about it, the more we believe it's quite possible we both have immediate relatives who might have OCD, though certainly not as severe as Dan's was.

Were there any major turning points or breakthrough moments for Dan in tackling his OCD?

We were extremely fortunate that Dan never had recovery avoidance and always accepted help readily. For me, there were two turning points in his journey. The first was his entrance into the residential treatment programme. Even though I had some complaints about this, the bottom line is that they knew ERP therapy and I believe this therapy literally saved my son's life. The other was Dan getting off all his meds, which harmed him, both physically and mentally, and in some cases, made his OCD worse.

What key advice would you give to parents who suspect their child might have OCD?

They should consult with a competent specialist as soon as possible, as the condition rarely goes away on its own. In most cases, the earlier it's addressed, the less ingrained it will become, and the easier the journey to recovery will be. Even if you think things are 'not that bad', there is no reason not to meet with a specialist. If your child doesn't have OCD, the therapist can still address whatever your concerns are.

And your advice to parents whose child has already been diagnosed with the condition?

The most important thing is to connect with a therapist who specialises in treating OCD through the use of ERP therapy. The International OCD Foundation (IOCDF)** has a list of questions that you can ask potential therapists in order to find the right fit for you.

Remember, also, that while the experts know about OCD, you are the expert on your child. Your thoughts, concerns, and opinions are important and should be heard.

Lastly, the journey through OCD can be hard on the whole family. It's okay to be angry, frustrated and upset, as long as you make it clear to your child that whatever you're feeling is directed at the OCD and not them. Our children need to know that they always have our love and support.

How is Dan now?

I'm incredibly thankful that Dan continues to do well. He graduated college and moved across the country. He's working in his chosen field, supporting himself and living life to the fullest. His OCD is classified as mild.

I would like to thank Janet* for taking the time to share her experiences. You can read more about them on her excellent blog.

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*Pseudonyms Janet uses to protect her son's privacy.
**The IOCDF is based in the USA. For details of UK-based organisations, and online resources, see the sidebar.