09/07/2018 14:56 BST | Updated 09/07/2018 14:56 BST

Living With A Child Who Doesn't Want To Live

Next time you joke “I’m soooooo OCD” please spare a thought for those who really are

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Having children didn’t come easy to me. Eventually, with the help of IVF, I got pregnant with twins. Every single day, I am grateful for being able to have children: they have been my greatest joy and blessing. I have seen first hand the agony of women desperately wanting children, but not being able to do so. I have also seen the pain one dear friend has suffered after her baby was still born and that of another when her child was battling cancer. So what do you do when your otherwise healthy child doesn’t always want to live? When the illness is in their head? On the outside, they appear ‘normal’ but everyday they are battling demons which never leave them. Is it my fault? Did I do something wrong as a mother? Why can’t I help them and take their pain away?

We realised my daughter was not well when she was around 11. With her, it showed itself in panic attacks to begin with, but the worse it got, we sought medical help. She was diagnosed with severe Obsessive Compulsive Disorder, and anxiety/depression, and then there was the self-harm. There is such a misconception around OCD. People joke that they “have OCD” when they like to have “things in order” etc. Mark my words for anyone suffering with OCD, it’s definitely no joking matter. 

If you have OCD, you experience frequent obsessive thoughts and seemingly irresistible compulsive behaviours. The obsession is an unwanted and unpleasant thought, image or urge to act, or to repeat an action and will often cause feelings of anxiety, disgust or unease. 

So the compulsion is precisely the ‘repeated behaviour or mental act’ that you feel you need to carry out to try to temporarily relieve the horrible feelings brought on by the obsessive thought.  Or because you fear that something awful and disastrous will happen if you do not give in to the compulsion - maybe the sudden loss of someone you love. For example, you might get a ‘bad’ thought or image while you are walking up the stairs. So you have to walk up those stairs time and time again until it “feels right” to stop; or you may tie your shoe laces repeatedly until you feel you can stop.  It varies from person to person,  but it consumes their waking hours and they can have hundreds of these thoughts or images a day,  leading to so much of their time being taken up by their compulsions to relieve these feelings. As an observer, it’s painful to watch so I can only imagine the hell of the sufferer. 

With this can often come depression, anxiety and self-harm. I could never understand why my beautiful, gorgeous, thoughtful, funny, clever and kind child would want to harm themselves or leave this world? It terrified me. She was taken out of school for her own safety and for a year she stayed at home while I watched her 24/7. I didn’t let her out of my sight, even to have a bath or go to the toilet. We were told to remove anything that she could harm herself with, even paper.

If someone wants to self-harm, they will. And she did. Each time it broke a little bit more of my heart. But then I met a wonderful man whose son committed suicide and he has made it his mission to help teenagers like my daughter. He explained that when you self-harm, it’s not necessarily to endanger your life,  but can offer an immediate release from all the pain that you’re feeling. Similar to a recovering alcoholic (like myself), you take the first drink to numb or give you that hit. You feel better but then invariably it’s followed by feelings of shame and self-loathing. 

We are in the lucky position to have private health care (of course, many people are not so fortunate), and so my daughter was able to get help from a brilliant psychiatrist, combined with therapy and medication. Today she is back in school and can do things we never thought she would ever be able to do. Simple things like going out with her friends, going on holiday, shopping, laughing and feeling happiness. That’s not to say day-to-day isn’t still a struggle for her. It is. But without this help I shudder to think what may have happened. Going down the NHS route we could have waited a year for a diagnosis, let alone help. Not the NHS’ fault of course, but that’s the way it is often when it comes to mental health.

So next time you joke “I’m soooooo OCD”  please spare a thought for those who really are. 

Useful websites and helplines:

  • Mind, open Monday to Friday, 9am-6pm on 0300 123 3393
  • Samaritans offers a listening service which is open 24 hours a day, on 116 123 (UK and ROI - this number is FREE to call and will not appear on your phone bill.)
  • The Mix is a free support service for people under 25. Call 0808 808 4994 or email: help@themix.org.uk