Guest post: "My daughter's OCD diagnosis was almost a relief"
Posted on: Wed 09-Dec-15 11:28:48
(17 comments )
When your children are small and feel unwell, a hug, a cuddle, or a kiss on the forehead usually takes some of the pain away. But as they move through their teenage years, often the very last thing they want is physical contact with you. Instead, they plough their own furrow, make their own mistakes - and grow, slowly, into the men and women you dreamed they would be.
If your child, like my child, becomes unwell with a mental illness, this journey into adulthood becomes harder than it should be. Teenagers have a torrid enough time negotiating the minefield that is adolescence - add in anxiety, OCD, depression or any other mental illness, and life suddenly feels pretty treacherous.
When my daughter was about 13 or 14, she began to be hypersensitive to smells. Rules were laid down about what was and wasn't to be in the fridge. Every switch and plug was pulled out before bedtime. Anything out of the ordinary and new unsettled her.
But I'd never had a teenager before. Were my growing concerns an overreaction to 'normal' teenage behaviour? I felt I needed to consider my own expectations before I could support her - were they unrealistic? Was I the one who wasn't coping?
One particularly difficult afternoon - filled with shouting, upsets over foods and bizarre demands over the way family life was organised - convinced me that this wasn't the case. Once the air had cleared, we sat down and I began to talk - openly, evenly, fairly, and without judgement. I explained how I felt, and said I could see how genuinely upset some situations made her feel. But that I could also see that this level of upset was outside what I considered to be 'normal', and that her behaviour was changing. I asked her for suggestions - what did she think we should we do now that we had sat down and talked things through? I tried hard not to apportion blame or throw labels about, and I tried hard to let her know I was here to listen. We agreed to go to the GP.
OCD drives you to do things, repeatedly. You have no choice in this, and if you don't get it right, you fear something awful will happen. That really isn't the same as putting your clothes away in colour-coded boxes, is it?
Sympathetic though our doctor was, the number of children and adolescents needing the support of mental health teams far outstrips the appointments available. Despite being told that my daughter really was ill and needed professional help; despite being told if we had a crisis (thankfully, we never did) that we should go to A&E; despite having to support my daughter through her increasingly frequent panics, we had to wait four long months for an initial appointment with the CAHMS (Child and Adolescent Mental Health Services) team.
This period was hard. I had a daughter who was coping with a serious mental illness, but we had no idea how to support her at all. No strategies, no support, nothing. My daughter knew she was ill, but what now? We had so many questions and so few answers. We were in limbo.
Zara was wearing herself out, using all her energy to maintain as normal a facade as possible at school. There were times when she came home upset that someone had laughed at her for checking, and re-checking something - or had left her behind because she was taking too long to leave a room. School listened, but because Zara was functioning fairly well, they didn't feel they needed to add her to the SEN register. As she had no formal diagnosis at this stage, I had no right to push for support.
Teenagers don't do waiting very well, and by the time many finally get treatment they have been coping with their illnesses for a very long time. To hear that Zara had OCD came almost with a sense of relief, although it took more than five months from the first GP visit to a verbal diagnosis from a psychologist at CAHMS. With a name and a diagnosis, with information at our fingertips, we could help Zara. First, there was more waiting - but eventually, we started cognitive behavioural therapy and a trial with medication. This alleviated Zara's OCD symptoms, though it also numbed many of her emotions. Getting the medication right was a balancing act.
As a parent I decided to be honest with everyone who asked us about Zara. I explained that Zara had OCD and how this affected her. She too was very open. "Disarm people with a smile," I would say, half-joking that OCD wasn't infectious. It was also important, for my daughter's sake, to challenge those who trivialised OCD. Cleaning a house until it sparkles or organising CDs into alphabetical order does not mean someone has "a touch" of OCD.
OCD drives you to do things, repeatedly. You have no choice in this; often, if you don't do a particular task well, you have to start again, and again, until you get it right. If you don't, you fear something awful will happen. It really isn't the same as liking to put your clothes away in colour-coded boxes.
All this happened six years ago. Zara has grown into a woman I'm immensely proud of. She has run a marathon, walked 100km in ten days, studied hard to get into university and makes me roar with laughter often. If your child is struggling to cope with life, is waiting for an appointment or has a friend who is, then please have a conversation with them. Let them talk and take the time to listen. Ask what they want from you as a parent or as a friend. Support them, and importantly find others to support you too.
The Time to Change programme aims to end the stigma and discrimination faced by people with mental health problems.
By Becky Thorn
My child suffers with a mental illness too. Not only is it devastating for him and us, I also feel the stigma will affect him so haven't told anyone.
That breaks my heart but I think it is the right thing for him. Thanks for sharing your story, it means a lot that others can say what I can't.
Of course a diagnosis is a relief!
I've been diagnosed with OCD recently and it's an enormous comfort to know that all the horrible, scary thoughts I have about harm coming to me or people I care about (and the safety rituals I feel compelled to perform to neutralise them) are not unique to me. Once a problem has a name, there is a course of action to take. And however hard it is to believe it, it means that I'm not a terrible, wicked person - I've just got a disorder.
Thank you so much for this post. My son has just been diagnosed with OCD and started medication on Monday. I'm supporting him all the way but I find myself sick with worry a lot of the time.
To hear your dd came through it and is living a normal life is such a huge relief to me.
OCD drives you to do things, repeatedly Can I just mention that it doesn't, not always? The pure 'obsessive' form still gets diagnosed under the same heading but because there aren't any compulsive rituals to break, it can be hard to treat.
Did my mother write this?! This sounds so much like me. I always had traits of OCD but around 14 years old it really flagged up and I took a very long time off school, which resulted in my diagnosis of OCD.
It was definitely a relief for me, but what we really really need now is some understanding of how debilitating OCD can be. I don't arrange things in certain order, my room looks like that of an average twenty something, so it means I get told I can't possibly have OCD.
I just finished reading the book The Man Who Couldn't Stop by David Adam and would recommend it to anyone who wants to learn more about OCD, its treatments & prognosis, etc.
Thanks Lancelottie my dd's OCD is repetitive intrusive thoughts, no compulsions or rituals. Treatment seems agonisingly slow and takes a lot of effort.
Hi my DD also suffers with mental illness - quite severe generalised anxiety. She is also under CAMHS and we too had about a 4 month wait after GP referral. She exhibited many OCD symptoms - checking, rituals - these were coping mechanisms she devised to keep herself feeling 'safe'.
She's only 9, and I fear so much for what the future holds. I hate to see her torturing herself with worries about things that other children just don't even think about.
I just wanted to say that I sympathise with your frustration - the shouting and upset. It's so difficult to deal with, day in day out. I find it a constant battle to remain calm and patient in the face of such irrational behaviour. Even after the diagnosis, even when you know they can't help it - it's hard.
Thank you for sharing your story. It's lovely to hear how much your DD has achieved, and that she is coping. It brought a tear to my eye. Well done for getting her the support she needs.
Stonkingly difficult and exhausting, isn't it, Thornrose? (For her, I mean, though it doesn't half take it out of the family as well.)
DS had a two-year wait for treatment the first time round, and a 9-month wait for further treatment mid exam year (oh joy), and is showing signs again. Bugger.
This really resonates with me, albeit from
the sufferer's perspective. I have OCD, though these days, after medication and extensive cognitive analytical therapy that I was lucky to be able to access, I would say that I am in recovery. Like your daughter, my OCD started in my teens, mostly centring on checking things in order to avoid harm coming to my loved ones. It would be periodically more of a problem and then subside, usually in relation to stress in my life. It was something I internalised, that I kept from other people. It became significantly worse after I had my DS, when I finally sought help. It is exhausting having OCD. The hours spent on rituals, the hours of crippling doubt that you've done X correctly, blended with the fear of what might happen, the temporary relief through the ritual. This really isn't getting your house sparkling - it is a prison. I am so pleased that your daughter is thriving: I wish you all the best for the future.
You must be very proud of your daughter
As an OCD sufferer I know how exhausting it can be, I've had CBT and am considering medication at the moment.
I found out I had OCD when I was a bit younger than your daughter, and my mum thought shutting me in my room and telling me I couldn't wash my hands would help or cure me
I don't like telling people about my OCD because then they just think I have an immaculate house! I don't, I'm a bit of a hoarder, which people don't realise is also an OCD trait.
People have also shared that they have OCD because they like things colour coordinated etc, so frustrating!
It's good you can be honest, more awareness need to be out there.
I grew up with a sister with severe ocd , it was of course my normal but looking back it was nothing like normal. It was awful for all of us but we survived and she has it under control now ( ish ) .
I'm so sorry I didn't mention Pure O Lancelottie and Thornrose, I was really thinking about our own family circumstances but you are so right to point out that Pure O is very different from the scenarioI painted but gets a similar sounding diagnosis.
Goodness, no, don't apologise! It's just that we found even the CBT specialist was a bit stumped by Pure O: she started talking about how breaking the compulsion to do the rituals would help retrain the mind and reduce the anxiety, and didn't seem to know what to do if there weren't any physical compulsions.
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