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 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 checks, they are worried something bad could happen and it’s their fault.
An example of someone with BBD could be someone concerned with their weight and believing they are too big and as such, are ugly. I spoke to 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 just didn’t fit in at secondary school and was surrounded by the wrong people. I did also have a minor trauma during this period that also contributed. I think a combination of these things and small incidents caused my ORS. Please note, I have never been told I smell and trust me I have asked!! Asking people for reassurance is my number one safety behaviour, so wherever I went, if I was anxious, I would ask people if I smelt.
ORS has had a massive impact on my life. Throughout my 20’s I was able to cope with everyday tasks such as work, social situations , etc. Once I had my breakdown at 28 it really affected me….I was worried everyone was talking about me. Every time I heard people speak, I thought they were saying ‘he smells’, ‘he stinks’ and ‘he needs a shower’, etc. Recently, I have been speaking to others with ORS and they said the same happens to them. I believe these are verbal hallucinations of the mind caused during times of severe anxiety. 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 and contacting the council about an disgusting odour from our home.
I have 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. I am not telling you this for sympathy as I am well aware I could be a lot worse off and I have seen how others have shown determination and courage despite having terrible luck, it is purely to show how debilitating ORS can be.
When I was younger, I adopted a number of safety behaviours or compulsions to combat my smell beliefs. I use to have extremely long baths/showers (I think I actually took the paint of the walls it was soooo steamy!!), I use to carry a bag with 3–4 deodorant canisters, I use to regularly change into new clothes, sit on my coat or jumpers, open windows, over sleeping, avoidance and reassurance to name a few. 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. I wish someone telling me ‘I don’t smell’ works. Don’t get me wrong, I feel great when I hear it but unfortunately, deep down I don’t believe it. Through using CBT techniques, I have stopped many of these safety behaviours.
Many things can cause my anxiety to increase. It could be going on a train and someone opening a window next to me, or sitting in a restaurant and the person next to me suddenly getting up and leaving, people having a quiet conversation and whispering or even people sniffing or blowing their nose. There is no limit to how people’s reactions affect my ORS. I am so exhausted after a day out because my head is in hunter mood, 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. A challenge for me would be going to coffee shop, sitting down near to other people and staying until I have finished my drink rather than adopting my usual safety behaviour of sitting in a corner far away from people and chucking my drink down my throat as fast as possible!
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 by my local ADAPT team (Anxiety, Depression, Affective disorders, Personality disorders and Trauma) 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, as when I worried about something I could show my support worker rather than someone taking my word for it. We tend to go to café’s in my local area. I can then 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 of me will be there….warning…smellephantman, do not serve! When I am feeling well, me and my support worker can laugh at these outrageous thoughts but at the time of having them, I truly believe them.
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 Mind 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 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 to Olfactory Reference Syndrome and Me!
Please see below, resources and services I have accessed in the past and further reading materials.
Books:
Overcoming Obsessive Compulsive Disorder by 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
OCD UK — www.ocduk.org — 03332 120 703
OCD Action — www.ocdaction.org.uk — 020 7253 5272
Body Dysmorphic Disorder Foundation — www.bddfoundation.org
Mind — www.mind.org.uk — 0208 215 2243
Mental Health Mates — www.mentalhealthmates.co.uk
Choices — www.choicessupport.org.uk
