First signs to diagnosis

What causes OCD?  What are the very first signs?  Does OCD germinate in childhood?  Does the trauma of grief in childhood trigger abnormal thinking?

My potential triggers are explained below, when OCD was unknown to most of the general public.

My first memory of abnormal thinking would be after my father unfortunately died from lung cancer when he was only 31 years old, and I was just 10 years old.  Decades ago, death wasn’t handled as well emotionally as it is in the 21st century, added to this was the stigma of cancer being less talked about, and the delicacy of my young age, meant I was mostly kept in the dark (metaphorically speaking, not literally of course).

My mother took advice from my teacher and family that it was wisest not to let me attend my father’s cremation service, and that I should have the normality of attending school that day.  The lack of communication, and the intention of protecting me from the sad truth of his death and funeral were all done with the best of intentions, but it is now understood that the consequences meant I was left with lots of questions and ‘a lack of closure’ as it is probably referred to now.

I watched my father become more and more ill, and less and less capable of being fun with me.  He had a single bed put into our lounge, he stayed in his pyjamas and lay on the bed all day and night, became frail and coughed continually.  I sensed a change in mood in the house before he died, but had no idea he was going to die.  He died in hospital a couple of days after being transferred from his bed in our lounge.  I don’t remember it, but a few hours after his death my mother returned from hospital and apparently sat me down to explain he’d died and wasn’t coming home to us. 

No memories

Why can’t I remember such a significant moment?  I can only remember what she’s told me happened.  I don’t have any memories of how I felt on that massively important day, and yet most humans can remember being ten years old.  I envy the details people remember, like ‘that day it was cold’ or ‘we had just eaten breakfast’ etc.  These are my memories of that period in time:

  • There were hushed voices and whispers.
  • Doors were closed on me with instructions like “you go and watch the TV.”
  • Faces, especially my mother’s, seemed sad all the time. 
  • It seemed wrong to laugh. 
  • I mustn’t overhear my mother on the telephone in case I hear something I shouldn’t.
  • I must be on my best behaviour, and I must have decided not to ask too many questions.

Probably all of the above is normal at a time of grief, especially when a ten year old is involved, but my thoughts also took on a stranger curiosity:

  1. Is my dad really dead, and I won’t ever see him again?
  2. Did my mum and dad split up or get divorced and I’m being told he died as it’s more final but he’s just gone away?
  3. The one that I most often thought about …  Is my dad badly disfigured or still really ill in hospital, so rather than upset me, they are saying he’s dead, but he’s not really?

These thoughts were not healthy and tormented me, but I didn’t feel able to vocalise them until I was in my fifties.  I suppose I felt guilty for thinking these thoughts, and sure enough my mother was very shocked to hear my doubts when I eventually told her.  It would have been so quick to nip my imagination in the bud, but how was anyone to know I was having these awful thoughts.   I was clearly in denial and clinging to false hopes. 

Losing my father and our happy family home life being shattered is bound to have impacted me negatively mentally, but ten year old children dealing with the death of a parent shouldn’t mean they’ll automatically have to live with severe OCD many years after the tragic event?  So I try to reflect on any signs back then that could be relevant to behaviours now. 

Is it unusual that my mother would tuck me up in bed each night and the blankets would be tight across me (that’s not unusual) but I wouldn’t move in case the blankets became untucked and that would be a ‘bad’ thing?  I avoided bad things, and presumably I thought it would be bad luck to let the blankets become untucked.  I would stare at the ceiling that my dad had decorated with random 12×12 inch off cuts of wallpaper used around the house (a very creative, unique and economical way of decorating).  I’d count the matching patterns over and over – one pattern had storks in a pond, so I’d count how many squares had the storks on, how many storks were there in total, and so on and so on.  This counting ritual at night aged ten years, could have been the start of my OCD counting trait? 

I think the next thought process I had that may not have been normal was I started to say in my head ‘If I count to xx and if xxxx hasn’t happened, it will mean bad luck/I should do xxxx /I shouldn’t do xxxx.’  It was a way of making decisions, or a type of fate I’d apply to my actions.  I did it recently, when I couldn’t make a decision about travelling somewhere and I happened to be weighing myself on scales when I thought ‘If I weigh xx I should travel, but if I weigh xx I shouldn’t.’  Is this normal?  Was this the start of unusual thinking for me personally, or do other people think in this way?  I do find it hard to make significant decisions, I don’t like the responsibility because I always lean towards the worst case scenario, or fixate on what could go wrong and that would be my fault.

Counting to help anxiety

I do remember when I was 10 – 13 years old, being asked to walk to the village postbox to post a letter for my mother.  It must have been important to her because she said “Don’t lose this letter, make sure you post it properly.”  This was my first recollection of staring at the postbox slit, the floor around, and consciously thinking ‘the letter did go in the slit didn’t it?’  When I stopped staring thoroughly I walked away, but returned to double check.  It seems I was hopeless at being given any responsibility from an early age.  If only I’d known then that I would still be doing this checking ritual decades later.  Recently when a letter I sent didn’t reach its destination I stressed over it for days beating myself up that I hadn’t taken a photograph of the stamped addressed envelope as proof;  it turned out it had arrived but the recipient made a mistake, I hadn’t!

When I was 16 years old I used to look out of my bedroom window watching cars go past waiting for my boyfriend to arrive in his car.  I used to think ‘If the next car isn’t his, he doesn’t love me’ and then ‘If his car isn’t here after the next four cars pass my window, he is seeing someone else.’  Needless to say, I’d wind myself up mentally before he’d even had chance to arrive and say hello!  At this time I also started to ‘take control’ of calorie counting by logging everything I eat in a notebook and counting the calories from a little yellow book (very popular at that time).  I tried to get to 100 calories a day.  I would even count the calories in a stick of Wrigley’s chewing gum.  I eat tinned low calories soups that were under 100 calories and not much else.  Fortunately family circumstances improved and I did not go on to get anorexia but I it was heading that way.  Looking back to that period of time I was unhappy, lonely and had no control to be able to improve that, except I could control my food intake.

Counting numbers still figures highly in my current daily OCD traits because every time I turn off a tap, before I leave the room or last thing at night before bedtime, I hold my hand under the tap to make sure it isn’t dripping and count.  The numbers are different but can go as high as twenty-something when I’m really stressed, to make sure the tap doesn’t start dripping.  I have read that with OCD there is a problem in the brain not trusting what the eyes can see?  Why is this, nothing really makes sense with OCD.  Whenever I lock the door I push the handle down and count each time I do it, 1, 2, 3, 4.  I then start to walk away and often return to the door to try the handle again and count 1, 2, 3, 4, 5 this time. 

When I was in my late teens still living with my mother, and now a step-father that I didn’t like (a minor reason was he always seemed to have dirty hands), I started to wash my hands more frequently.  During this period of time I also wanted my own ironing board in my bedroom because a lady used to do the family ironing but I didn’t think she was clean enough so I didn’t want her touching my clean washing.  This meant my step-father would laugh and ridicule me by saying “You’re like Howard Hughes”. 

Wash everything clean

The cleanliness and unusual thoughts were initial signs of what was to come when AIDS hit the headlines with horrific impact in 1987.  This killer disease (as it was in 1987) baffled scientists but my thoughts crystalised shockingly into avoiding places where there could be blood that could potentially be contaminated with AIDS, that isn’t curable, and could contaminate my children or me and then I could contaminate my children during daily contact.  This included avoiding hospitals, doctor’s surgeries, dentists, and even the worry that head lice feed off blood, which again could be contaminated.  My fear of blood and the possibility of contamination had begun but I didn’t recognise it as OCD, back then it was a phobia. 

My OCD became noticeably problematic when I was about 25 years old, married with two young children.  My behaviours relating to protecting my children’s health became extremely obsessive.  All mothers protect their children, but unfortunately I took this instinct to an abnormal level, and it was detrimental to a normal happy family life – OCD wasn’t diagnosed until I hit a massive low point in my early 40’s.  Since then it has got increasingly worse over the years, until now it is disabling – it’s the disorder that just keeps taking – give it an inch and it wants twelve, give it twelve inches and it wants twenty-four!