Our perfect baby boy was born in June when the sun was shining. My third child, unexpected and precious. I often wonder now just when the demon of OCD began whispering to him, but in these days we were happy and unaware that this silent disease was waiting in the wings.
John was a loving child. Over sensitive perhaps, but bright with a love of nature and an eagerness to learn. School parents evenings in those days were filled with praise for this quiet boy, polite and helpful. He had a few close friends but was often bullied by the rabble.
It was one morning whilst leaving for school when I first noticed that John did exactly the same thing each day before leaving the house. A discreet sequence of touching and checking, carefully disguised but unmistakeable once noticed. He was seven years old.
A few days passed before I approached the subject. I tried to sound casual.
“I’ve noticed that you always do the same thing every morning when we go out of the door. Why is that?”
His eyes showed shock that I had noticed, then he lowered them and shrugged.
“It’s OK,” I continued, “ Lots of people have little habits like that. When I was young I used to always touch light switches in a certain way, the one day I realised that I should try to stop this, and I did. Maybe, if you can, you should try to stop too.”
This was true, but I had no idea that he would not just grow out of this habit, that maybe it was something more sinister.
That night I spoke to my husband and mentioned that I thought our son might have OCD. I had heard the term loosely used and had a vague idea about habits and obsessions. He told me not to worry and hinted that I had imagined it. No one else in the family had noticed anything. I put the thought to the back of my mind – and John became even better at hiding what was going on.
When John was around eight he asked me if I could get him some sleeping tablets. I’m ashamed to say, I laughed. Soon afterwards he developed a frequent throat clearing noise that I took to be some kind of cough. I took him to the doctor who said there was nothing wrong. This passed after a few months, although it occasionally recurs briefly. Looking back I suspect the possibility of a touch of tourettes and delayed sleep phase syndrome – both closely linked to OCD.
Years passed as though everything was normal. In his adolescent years John was perpetually late for everything. School, appointments – and trying to catch a flight was a nightmare! We would have to pretend it was much earlier than it actually was to be in with a chance. Getting him to get ready and then actually go through the door whilst he hovered and checked was an infuriating task. Endless punishments and arguments followed but nothing could change his behaviour. The challenge of the teenage years, we thought. I occasionally noticed some minor touching rituals and strange eye movements, but didn’t really make a connection or see it as a huge problem. It was just John’s little habits and we all accepted it as being normal for him.
One night when he was fourteen John confided in me. “I think my OCD is getting worse. My friends are starting to notice.” I asked if he thought he should see a doctor. He was undecided so I googled OCD and find out what treatments were available. We were shocked to find it was classed as a mental health issue and decided that he did not want this kind of a stigma on his medical records. He would try to overcome it himself.
At fifteen we began to encounter some problems at school. John was becoming argumentative with some of the teachers and we were called in to discuss it. The head of year said she could not understand this sudden change of character. We had never had this kind of problem with our daughters. Perhaps it was a teenage boy testosterone thing? It seemed worse when he was under stress.
A few months later came the turning point. I was awakened in the night by my son, distraught. He could not enter his bedroom! I was shocked and alarmed. I had no idea how bad this had become. I thought we were talking about a few little habits. It was time to seek help.
In the doctor’s waiting room I thought back to all the little things over the years that must have been down to OCD. The perpetual cough (that was more like throat clearing) I had taken him to the doctor for. The spitting from the age of three every time he saw a spider or something that seemed dirty. How long had he been living this nightmare? How had I not realised and got him help years ago?
He asked if he could go into the surgery alone. I explained that on other visits he could, but this first time I wanted to be there to be sure he was offered some help.
The doctor listened to what I had to say, then turned to John. “How does this affect you?” he asked. As I listened to John speak I was struck dumb. He quietly spoke of how he was often unable to sleep, frequently unable to eat and my head began to spin. The uneaten dinners and unused dinner money, the endless mornings when I shouted at him because he wouldn’t wake up, it all began to slot into place. What kind of a mother am I that I didn’t notice? This is why he didn’t want me to go in with him. He had become an expert at hiding these thoughts he was ashamed of, the behaviour that prevented him from being ‘normal’.
I quickly learned what I could about OCD and found it is listed by the World Health Organisation in the top ten of most debilitating illnesses. John began to open up to me about the manifestations of his condition which are complex and heartbreaking, but I know there are things he still cannot tell me. He wants to be seen as ‘normal’, and he knows these compulsions and rituals are irrational.
Now eight months on we are awaiting help from the Child and Adolescent Mental Health Service. GCSEs are upon us and things are getting worse but we are hopeful that one day he will begin to receive the help he needs and start the journey to some kind of recovery. We have struggled to make his school understand and hope that now after several meetings they will stop punishing him for not being able to concentrate or becoming stressed due to his condition. We are encouraged that some small allowances may now be made for him, e.g. allowing him to wash his hands when he feels the need and getting a time out pass to leave the class when stressed, but in truth they do not grasp his condition and whilst I wish this were different, I understand why.
The charity OCD-UK have given us precious help and advice in a world that has little understanding or sympathy for this very real illness which is so often forced underground by stigma. Resources are scarce and understanding is thin on the ground.
We feel alone in a world that thinks he should snap out of it, or that everyone is a ‘bit like that’ because they like their books straight. In the eight months since we visited the GP John’s condition has deteriorated and he is desperate to see someone. I am fearful for how long he can cope like this.
On a good day it is great to have laugh with John and see him, whilst still habitual, relatively relaxed. He is an expert at hiding it on days like these. On a bad day, frozen on the landing outside his room, clearly distressed, it is heartbreaking. All we can do is pretend we haven’t noticed and pray for it to pass, unable to help. Drawing attention to it seems to make him worse, just like interrupting a ritual makes him start all over again.
Further into the future we hope for great things for John. For a stable job and relationship, and that when treatment comes for him, it may help him to control and ignore the voice of this whispering demon he feels compelled to obey.