Experiences
For a long time, I hadn’t realised how much of my life revolved around a feeling of ‘not quit right’. Since I can remember I’ve always felt different. I’d worry about mess, cleanliness and accidents happening. I kept it completely to myself but had a strong feeling that people could see straight through me. My OCD is considered by some to be ‘type O’. This doesn’t mean that compulsions are not present, it’s just that they are less visible to others. I’m still trying to understand what this means to me, but I’d like to share with you my understanding so far to help raise awareness and to bust some myths as to
what my reality of living with OCD is.
“Everyone’s experiences are different, and it’s common for them to change over time”
Everyone’s experiences are different, and it’s common for them to change over time. From speaking to others, I now understand that a feeling that things ‘aren’t quite right’ or that you feel you may be a bad person is a shared commonality for those of us with OCD. As an adult, I worry a great deal that I may be a narcissist, psychopath, or sociopath – and my brain repeats this to me regularly! I have regular violent vivid thoughts about accidents happening; tiles falling on my head; my son being accidently poisoned; gas cannisters exploding; children falling under bikes. My body reacts as if these scenarios are real; I’ll flinch, my heart rate will increase, the stress impacts on my memory, I have difficulties sleeping and my body is in a heightened state of anxiety as it’s default setting.
“I have good days and bad days”
I have good days and bad days, on a good day I will repeat internal ‘checking’ e.g. how am I feeling? Is it right that I’m feeling this way? Should I be feeling something different? Am I ill? I may also experience self-doubt, but a lot of these thoughts can be pushed aside now that I’m aware that it’s OCD, it’s not me. On a bad day, these thoughts are constant, they can’t be pushed aside, and I will carry out anything that will help me feel ‘right’ – from trying to find the perfect seat at the perfect table in the perfect pub to avoiding anyone I care about in fear they may be accidently hurt by me.
Discovery
I’ve worked in mental health services across different settings for over 12 years. I also have a degree in psychology, with clinical psychology as a final year topic. I had NO IDEA what these experiences were until 2 years ago. I was taught, and believed, that OCD was about contamination, symmetry, and orderliness and all the other stereotypical things that come to mind – “Oh you’re so OCD!”
“I’ve found out more about myself from watching Pure O and reading Bryony Gordon than I have from any mental health services”
Mental health professionals are comfortable and keen to discuss depression and anxiety with me, and I’ve related to the symptoms associated. As a result, the support I’ve received has centred around these diagnoses, but I’ve always felt that these were secondary to something else – of course I feel depressed, I’m anxious as f*@!, haven’t slept properly in weeks and I keep thinking my son is going to die due to accidental poisoning! I’m not sure if a mental health professional had ever asked whether I was experiencing intrusive thoughts, but if they had, I don’t think I’d have understood that that’s what my experiences were. Thank goodness for people such as Briony Gordon for being so open/honest in sharing their own experiences. It wasn’t until I came across a
TV show called ‘Pure O’ (watch it, it’s brilliant) that I finally linked my experiences to that of ‘Pure O’ and on further reading, that this was a lesserknown form of OCD. I’ve found out more about myself from watching Pure O and reading Bryony Gordon than I have from any mental health services.
“Only after learning from others, was I able to communicate what I was experiencing”
Only after learning from others, was I able to communicate what I was experiencing. Without this insight into OCD, I would have continued to face questions from the CMHT such as “are you eating?”, “are you sleeping”, “how are you feeling?”, “I had depression once……”, “I’ve found that natural remedies are better for anxiety than medication…..” and, my favourite one yet, from a psychologist “is your house excessively tidy” – yeah, helpful, thanks.
With my new, empowered, self-insight – I sought a private Mental Health assessment and received a diagnosis of OCD. For a long time, I have sort of ‘mourned’ for my health; I’ve resented that others got to live their lives carefree and have had to adopt an understanding that there is no quick fix,just ongoing management of my health. (Apologies to all the therapists I worked with – yes, I told you I understood that there was no magic wand, but I lied! OK! Show me the wand!). Adjustments aside, receiving a diagnosis and understanding that these thoughts are OCD, and not who I am as a person, has saved my life.
Marathon not a sprint
If I can pass on any advice to others who feel they may be misunderstood by mental health services, and are finding it difficult to manage their distress, it would be as follows:
• I wish I had educated myself sooner by understanding others individual experiences, rather than relying on purely medical knowledge. Empower yourself with knowledge.
• Understand that sometimes it’s not you, it’s them! The other person might be uninformed, and being stigmatising and judgemental.
• You’re entitled to your emotions. There’s nothing ‘wrong’ with how you feel – emotions are there for a reason.
• Taking medication isn’t a weakness if it keeps you well – continue trying until you find the right one, if medication is something you want to pursue.
• Do things that spark YOU joy! Not just what other people tell you to do (To the psychologist that kicked me off a waiting list for support because I didn’t want to do their chair yoga, I hate you).
• Be open to hearing about other people’s journeys – its proof that things can get better. I have felt better over time, through educating myself, through receiving my diagnosis, and I can look back on the work I’ve put in that will allow me to manage the challenges ahead that my OCD may bring me.
Resources and information
Pure O – https://www.mind.org.uk/information-support/yourstories/channel-4s-pure-necessary-uncomfortable-viewing/
Bryony Gordon – BBC Radio 2 – Dr Rangan Chatterjee: Out of Hours, Bryony
Gordon: Living with OCD, running and daily brain training
York Ending Stigma
To find out more about our work and to join us to end mental health stigma in York, please refer to our website https://yorkcvs.org.uk/york-ending-stigma/ or email us on yes@yorkCVS.org.uk