Suffering from Obsessive Compulsive Disorder is bad enough.
But what's it like to watch your child suffer with it?
Here, for OCD Week of Action, Karen shares her experiences of being the parent of a 13-year-old daughter, with OCD.
OCD came into our lives, not in the way the general public often perceives it - washing hands repeatedly, keeping things tidy - but by a fear of choking.
Out of the blue, three years ago, this fear set into Ellen's world, and was set to haunt her in a myriad ‘sneaky’ ways as the months moved on.
And affect our lives as parents in ways we could never have imagined.
Panic when eating led to dramatic weight loss (9th percentile) and a trip to see a paediatrician. At first, the doctor thought Ellen was grieving the loss of her beloved grandmother who died suddenly when she was 8. Then a few meetings with a clinical psychologist revealed- through drawings and talking - a fear of hospitals, sickness, death and the need to avoid ‘cracks in the pavement’.
And so, our OCD journey began.
Our daughter was beginning to perform some small rituals, which she felt compelled to do otherwise something bad would happen. We could see she was anxious, we could witness the weight loss, the tiredness, the tears; but nothing could prepare us for the road ahead.
Over the last few years we have seen rituals change from switching lights on and off, to walking in and out of doors, to pulling clothes on and off, to making little noises, to looking back and forward at pictures on the wall, to tapping her finger on items a ‘certain number of times’, to rubbing schoolwork out, rewriting and re-reading.
You see, OCD is complicated.
The ‘bully in her head’, as she was taught, was a cheat, a trickster, a taskmaster whom she had to obey. Now she knows it's her own thoughts - but that’s equally cruel.
Cruel; yes, that's what OCD is.
Our daughter has to fight to get to bed at night because her pyjamas are on and off, her duvet is up and down and her head is pounding with thoughts.
Homework can take ten times as long as it should, and then she needs to keep busy to stop her head from thinking.
Exhausting; yes, that's what OCD is.
As a parent, it's the worst pain in the world to see your child suffering when you have no control over it. You hug, you comfort and you accommodate the rituals, just to cause less distress for your child, and the family. You have another, younger child that you have to try to explain OCD to, and why it sometimes appears that their sister is ‘getting more attention’.
A huge amount of knowledge, strength and love is needed for a parent to help a child with OCD. We have read all the books, even the academic articles, we’ve learned tools to deal with it and we’ve fought every day for our child. It’s a steep learning curve and, sadly, even doctors and teachers don’t understand OCD.
Our daughter ‘hides’ her rituals in school, being discrete because even at 13 she knows the ‘stigma’. She’s not been SENCO statemented (Special Education Needs) and so support is not readily offered.
People ask us if we are devastated to have a child who is diagnosed with a mental illness. Of course we wish she didn’t have it, but we are grateful to have the ‘diagnosis’. Many children and adults go undiagnosed for years, so we are appreciative of the medical help our daughter has received.
A few months ago, the strain of my daughter’s OCD led to my own breakdown. For years you try to be the strong one, the fighter of the cause, the therapist, the mother, but it's Cruel and Exhausting, remember.
Your child’s anxiety makes you wonder about your own - did you do something wrong as a parent? Where did it come from? Particularly for me, I constantly blamed myself. I had a heart condition when my daughter was five. This meant a lot of visits to hospitals, fear of my own mortality and a definite strain on the family. Is this where my daughter’s triggers came from? No-one knows but it’s hard not to blame yourself.
When Ellen began ‘exposure therapy’, things got really tough. No longer could you hug or comfort your child, reassure her anxieties or let her do her rituals. Now, you had to be the bad guy. You had to make her stop, face her fears. Then the anger came. The child who respected and loved you turned to hating you.
Yet more Cruel . . . and Exhausting.
The exposure therapy is ongoing. It's the only true way to beat the beast that is OCD. As Ellen gets older she understands her thoughts more and how she can finally take control.
A negative has become a positive.
And it's just something we have had to accept and build into our daily lives.
I hope this gives some insight to OCD from a parent’s perspective. If I can offer any advice, it’s to read everything you can about it, but more importantly to not blame yourself.
Be kind to yourself, accept that OCD is an illness like any other. Support your child and fight to educate others along the way. Take breaks for yourself so that you can be strong. As a family, we have all suffered; we have had bad times but also so much joy.
Our daughter is an inspiration. How she manages every day at school and with all her hobbies, I will never know.
She loves singing and music and has huge talent. This is good therapy for her and for us.
And we love her, just the way she is.