Autistic, ADHD, and other ND-affirming spaces exist, but should OCD be affirmed? And what would an OCD-affirming space look like? The answer to the first question is relatively simple: yes, they should, as affirmation means that our identities and experiences are valid. The answer to the second question could take up a whole blog series. To start thinking about what this could look like we need to recognise the current understandings of OCD.

I am not a medical professional and share only my own experiences here.

My experiences of OCD treatment  

I was diagnosed with obsessive compulsive disorder (OCD) at the same time as my diagnosis of being Autistic (read My Diagnosis Story). I have not received specific OCD support since my diagnosis, or for the 15 to 20 years that I’ve lived with it before professional recognition.

The only support which has been suggested to me by the NHS, outside of medication (I’ll get to that in a minute), is cognitive behavioural therapy (CBT). I have been through one round of CBT through the NHS and found I was gaslighted, my practitioner was horrid, and I finished my sessions worse off than I was before. From my own experience, and from what other neurodivergent people have shared with me, CBT doesn’t tend to work with neurodivergent minds although there are apparently ways for this to be made more neuro-affirming.

Also, having been through one course of CBT through the NHS I am not sure I could go through it again even if it had been useful to me.

What else did they offer me?

Medication. The medication I take for OCD, and my other mental health differences, have helped slow and soften my intrusive thoughts. However, medication alone shall only ever help me with symptoms and not the underlying trauma which caused and still fuels my mental health differences.

It is also impossible know whether the medication is the sole reason my head space is better. Around the same time as starting these new meds, I also started a different script for something else and cut ties with a few toxic people. Having my son also completely changed my priorities and my hormone levels. I have also been lucky to partake in talking therapy through my university which has also been life-changing for me. A small space a few times a month where I can just let it all out. It is hard to pinpoint whether the medication alone would have helped.

The choice for me, and many others in the UK remains: medication which may make you feel worse and won’t tackle lifelong issues, or therapy which quite frankly will do the same. Not much of a choice really.

My experiences of online OCD spaces

When I was first diagnosed Autistic and OCD, I looked online to find similar others, to find people who shared the same life experiences as me. Thankfully I found a lot of amazing Autistic people and spaces. A lot of the OCD spaces I found online were for parents and carers. Others felt like an onslaught of non-consensual trauma-dumping. It did nothing to help my mood, intrusive thoughts or compulsive behaviours. If anything my OCD used this space to find different things to become obsessed over. I was trying to take notes on how to live with OCD and my OCD was taking notes on how to make things worse.

I do wonder what my experiences of these spaces would be like now that I am in a better head space. I know that they are a lifeline to many – I don’t want to put people off finding support, I just want to be honest with my own experiences.

Misconceptions of OCD

There are still many who do not want to consider OCD and other mental health differences as coming under the neurodivergent umbrella – despite Kassiane Asasumasu creating this term to include all people with diverging brains and / or central nervous systems. This exclusion is in part due to internalised ableism, superiority complexes, and because mental health differences are currently understood under the medical model of disability.

Some want to stay as far away from the medical model and the pain and harm it has caused many Autistic people, as possible. However, there are many of us who are both Autistic and physically Disabled and / or chronically ill who may see our experiences reflected in the medical model. Would I love to never have a migraine again? Is there an issue with my lungs which needs medication? Is IBS literally a pain in the arse? Yes, to all of that and plenty more besides.

Mental health differences, under the medical model, have historically been understood as shameful and wrong with the potential for violence. The potential for self-harm and harm of others does exist for some people, however believing this of all people with mental health issues isolates us all.

People’s perception of OCD, influenced by media characters such as Monica from Friends, is one of being highly organised, neat, tidy and a “clean freak”. I have heard so many people talk about how they are OCD about how they organise their pens, or a “little OCD” or “obsessed” about something or other.

Sayings like “we are all a little depressed, OCD, anxious…” denies access to help for many as we aren’t taken seriously in our homes, places of work or doctors’ surgeries. Not to mention the people who we lose behind these sayings – are people saying this because they believe it, or because they have undiagnosed mental health differences themselves?

My own experiences of shame

I have been with my husband for over 10 years now, when I was diagnosed at being Autistic, it was literally all I spoke about, focused on and did my degrees on (monotropism anyone?). I have shared so many of my inner experiences with Jay and also checked in with him about whether specific experiences are typical or Autistic (this might be moot now as he starts his own diagnosis journey!).

OCD, however, is something I very rarely talk about, to him, to others, online, anywhere. I am starting to share more now but it’s a slow process. My OCD has mixed with suicide ideation in the past, which I have had people dismiss and ignore (I just need to go for a walk, right?). I don’t want to set off alarm bells in people but also I need help at times like these.

When you share intrusive thoughts with others you are sharing your darkest fears. For me these are usually completely outrageous and unlikely (including the death of all my family due to complications with AIDS). And I might need to do certain behaviours to stop the little voices in my head which tell me that we are all going to die of something awful.

When you share this with people who have no connection to OCD, you sound like you’re lying or are being over-dramatic. People just cannot understand how someone could have these thoughts and behaviours all day long and still function (and some of us don’t function in the way we would hope, at all).

Shame, misconceptions and ableism are stopping people from sharing about their OCD and other mental health differences. OCD needs to be affirmed and I hope to look at how we can all create OCD affirming spaces for all those connected to OCD.