Olfactory Reference Syndrome and Me

Where do I start…I have Olfactory Reference Syndrome (ORS).  Basically, I think I smell bad and that others can detect it.  However in reality, I don’t smell and it’s all in my head.  When I say bad, I mean really bad. From rotten eggs, sewage, cheese to onions and human waste.

I don’t just think I smell around people either.  Oh no, I think my smell can travel through walls.  I joke to my dad that one day my neighbours will tie me up in rope and push me down the road in a cart, whilst people throw tomatoes and hiss at me.  As you can tell, I do joke about my illness otherwise it would literally make me sad.

I am writing this blog to highlight this illness .  This is the first time I have put a name to one of my blogs, so I am nervous about this.  However, by doing so, I am contributing towards my own recovery; accepting this is as a mental illness and not an odour problem.

I want to provide a little bit of background information but not too much, as I don’t want you all falling asleep ?. I have suffered with ORS since I was 15.  I was initially diagnosed with Obsessive Compulsive Disorder (OCD) when I was 20.  However, I was re-diagnosed with ORS in my early 30’s.  The way it has been explained to me, is that ORS is a combination of OCD and Body Dysmorphic Disorder (BDD). I was told by the Professor who diagnosed me,  that ORS is a very rare illness.

An example of someone with OCD could be someone who worries about checking – whether it be locks on doors, black plastic bags or a shop door.  They will then have compulsions which are behaviours used to combat their thoughts such as, counting the number of times they turn a key in a lock.  If they stop doing checks, they are worried something bad could happen and it’s their fault. 

An example of someone with BDD could be someone concerned about their weight and thinking they are too big and as such, are ugly.  I spoke to a therapist and she said people with BDD would draw a picture of a huge circle when sketching their body – even though their current weight is at the recommended level.  It is amazing how our head can distort reality.

I believe my Secondary school life is the main source of my ORS.  I was bullied for a while and suffered with low self-esteem.  I think a combination of these things and small incidents caused my ORS.  Please note, I have never been told I smell.

ORS has had a massive impact on my life.  I have been unemployed for 6 years now – having no structure to my week has had a significant impact on me.  I moved to my parents home for 2 years as I believed neighbours were talking about me. I have also developed a social anxiety due to thinking I smell and stopped doing many activities I use to love such as going to the cinema, attending music concerts, swimming  and attending football matches. Instead I would stay in the confines of my bedroom and would sleep the day(s) away.

When I was younger, I adopted a number of safety behaviours or compulsions to combat my smell beliefs. For example, I use to have extremely long baths/showers (I think I actually took the paint of the walls it was soooo steamy!!) and I would carry a bag of deodorant canisters whenever I went out.  These behaviours are not a solution to my anxiety….in fact it keeps my worries going.  This is because my problem is with Mental Illness.  Through using CBT techniques, I have stopped many of these safety behaviours.

Many things can cause my anxiety to increase.  It could be someone opening a window next to me, or a person in a cafe getting up and leaving, people whispering or even people sniffing or blowing their nose.  I am so exhausted after a day out, as I am checking my surroundings to protect myself.  To the outside person, I must look really dodgy.  Some people must think ‘why is that big bald man staring at me’?

I have seen many medical professionals over the years. In fact, so many people, I could write a telephone book ?. In the past, treatments have included counselling, CBT, exposure therapy and medication.  If I’m being honest, I think it’s helpful to have knowledge about your illness and to learn therapies but personally, exposure therapy has been most useful to me, when tackling intrusive thoughts about smelling bad.  This means going out and being close to people.  As I believe I smell, I normally keep my distance to prevent my worst fears from happening.

May I say at this stage, unfortunately, there is no magic pill with ORS and other mental illnesses.  I believe I deal with ORS best when I am motivated and prepared to challenge thoughts.

I also wanted to talk about managing my ORS during Covid-19.  Living through the pandemic has been a mixed bag for me.  I have suffered days of depression due to the fact I can’t go out and challenge my thoughts.  It is different when I decided to avoid social situations in the past, as it was my decision.  Overall though, I have made quite a lot of personal progress in the last year.  For me who doesn’t like to be surrounded by people, lockdown and the restrictions provided with it, allowed me a new perspective and to challenge my thoughts in a gentle way. I would have revelled in wearing face masks and keeping a 2 metre distance if this was introduced a long time ago!!

It started by taking walks in the park with my dad.  Then I gradually stopped wearing headphones whilst walking (a safety behaviour introduced to stop hearing people talking). I have taken each day at a time, with little steps.  In March I was also referred to a charity local to me.  I was allocated a support worker who I meet once a week for a set number of times.  This helped me immensely. I can challenge old thoughts and return to places I have been avoiding.  I also don’t like going to the same café(s) as a regular, as I am worried a wanted sign will be there….warning…smellephantman, do not serve!

I swear by having a positive book.  It’s the perfect way to challenge intrusive thoughts.  I don’t put anything negative in this book and can refer back to it in times of doubt and need.

I have accessed many mental Health Organisations in the past, mainly my local Mind service – these have been so important to me.  I attended many peer support groups with Mind for anxiety, depression and OCD. More recently, I have become a volunteer with HFMind and Mind in Bexley which is providing me with a new found confidence – I am no longer lonely during the week and I am starting to re-build a schedule to my week.  I also think it is important to add, that I have met 2 lifelong friends through attending Mind groups – as my friend says – ‘its good to finally talk to someone normal’!!

I am beginning to see a little light at the end of the tunnel, but I still have a long journey left with me.  I have seen how people have improved from a Mental Health disorder – whether it has been through treatments, medication or good old will power.  I don’t think I will ever believe I don’t smell but if I can think 80-90% of the time I don’t, I can accept that!  Thank you for taking your time to listen.

Please see below, resources and services I have accessed in the past and further reading materials.

Books:

  • Overcoming Obsessive Compulsive Disorder – David Veale & Rob Willson
  • Overcoming Anxiety – Helen Kennerley
  • Overcoming Low Self-Esteem – Melanie Fennell
  • Feel the Fear and Do It Anyway – Susan Jeffers
  • How to Stop Worrying and Start Living – Dale Carnegie

Organisations:

 

Peter Flexman 

Volunteer Psychoeducation & Workshops Facilitator

Posted on: 22nd January 2021

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