Let's make some noise! Part III: A Tidal Wave of Change.
I've been in the most incredible position recently.
Over the past few weeks I've heard from easily over a thousand other people living with OCD - that's a pretty special position to be in.
Having spent over thirty years believing that I was the only one dealing with such debilitating symptoms it's made my year... sod it... lifetime to hear from so many others with very similar stories. I've learnt such a lot from your messages and feel so proud to be part of such a kind, supportive and kick-ass community.
I thought to round up this series of blogs, I'd share some of the things I've learnt over the past month. I've learnt such a lot, from the messages I've received all the way through to everyday encounters. I'll obviously keep things vague and protect identities - that's super important but it would be wrong of me to hold such helpful knowledge to myself.
So here we go:
The amount of people who have read my article much be in the high thousands. I have not received a single rude or offensive response to it - not by email, in comments online, or on social media. I haven't seen one! I'm taking that to mean that a great deal more people may understand and relate to the content then we first thought.
People just like us are EVERYWHERE!
I have heard from people from almost every aspect of my life - my old jobs, through my son, in my local community - who have an OCD diagnosis. I had no idea. I am, quite literally, surrounded by people with OCD - either diagnosed or about to be. Now that's not a coincidence. It didn't just so happen that the woman who spoke about it on the BBC is also the one who happens to be surrounded by many others with the condition. This must be a general rule - and if that's the case, every single one of us must be surrounded by others too. We must live on the same road as other people who find their harm based intrusive thoughts upsetting, those who found new parenthood tough, those who lie awake at night trying to fight the urge to check the taps again. People who experience the same symptoms as us are EVERYWHERE! They're just keeping quiet too. It mind-blowing! It really is.
Awareness and Knowledge is on the up!
I have heard form a load of people who recognise the symptoms in themselves or others and are now seeking help. They had no idea they had the condition (mainly due to the way it's misrepresented - more about that later). Dr's appointments have been made, discussions have been had, support is being put into place, online communities are being found. Rather excitingly my blog is being recommended to people by perinatal mental health teams, therapists and doctors. There's a great deal of change happening at the moment, and knowledge and understanding about OCD is increasing, and it's all very, very, exciting!
The general public
I've has messages from people saying they had no idea what OCD really was and that they'll make sure they never refer to it incorrectly again - that they will be sensitive and supportive towards the condition and help to spread awareness alongside us.
The climate is changing.
People are feeling more and more able to talk about the nature of their intrusive thoughts, and the more difficult to discuss areas of their condition. It's helping to turn the negative cycle of shame, stigma, and silence on it's head. A steady adjustment into a positive cycle of change, openness and pride is well underway.
Talking of openness...
The Not So Great...
Some of the messages I received highlighted things we need to address. There's a sudden change of tone here but it's important that we understand them so that they can be addressed - we need to keep encouraging our journey around this positive cycle.
People being recommended treatment not in line with NICE guidelines.
This is a really difficult thing for me to write about because I find Acceptance and Commitment Therapy really helpful for my condition and that's not mentioned by NICE. But I do use ACT to supplement my treatment of CBT with ERP (with possible use of SSRIs) which is according to NICE guidelines.
I have received messages from people who have been recommended all sorts of alternative medicines, all sorts of practices (both religious and not) and received all sorts of advice.
We're all individuals, and different things work for different people, but it seems from some of the messages that I've received, that some of us are being recommended things that we definitely shouldn't be. I think in this case we need to make sure we are our own experts. Please make sure you understand what the recommended treatment is, and that if you have any doubts (including in your medical teams because they sometimes get it wrong too) contact the charities and check.
Unqualified mental health coaches/life coaches/expensive peer support
Okay, again this is a difficult one to address. We could all theoretically call ourselves 'experts'. The dictionary describes an expert as someone who has either studied to the point of being an expert or has experienced something to the point of becoming an expert. There are many of us out there with extensive lived experience and knowledge about OCD. I have been told on many occasions by professionals that I know more about OCD than them. That doesn't mean I have the right to claim myself an expert and charge a great deal of money for sessions with me. As it happens, I've never charged a penny for anything I've done - it's all been voluntary - but hypothetically would it be ethical to do that? For me, personally, the answer is no. Again, its a tricky one.
Some peer support workers are registered with the relevant governing bodies. They are held accountable for their words and actions. They have had peer support training. But - and this is a big but - many of them don't. They are insured so that if they make a mistake (which could have very serious consequences for people they are 'coaching') they are protected and covered and face no liability.
I've heard from quite a few people mentioning unhelpful advice from life coaches. I appreciate that the need for support is there, access to good OCD treatment is a disgrace in many places, but caution really must be exercised.
The internet means that for many people, correct information can be found online. If you are tempted to use a coach, make sure you do your homework first - find out everything you can about them. Anyone can create a swanky looking website filled with positive testimonials.
Professionals not understanding the condition
This does happen. Despite the wonderful advances in awareness, we are still coming across Drs, gps, health visitors, midwives, who don't understand the condition. So that means that even if we are in the brilliant position of being able to identify the symptoms of OCD, our first line of medical contact might be with someone who doesn't understand the condition. Remember you can always ask for someone else to treat you, you can treat you medical visit like a job interview and if the person doesn't have enough knowledge ask to change them for someone who does. Print off information from the internet or take in an About OCD information card from either OCD Action or OCD UK - both charities have resources you can take in to your appointment.
We need to talk about this next point because it is so important. It's not always easy reading and might be quite triggering but it needs mentioning. Occasionally, I hear from someone who does have a story in which their symptoms have been misunderstood. This is particularly the case for those who have intrusive thoughts about harming or abusing others (again I want to make this clear that in OCD, these intrusive thoughts cause such upset because they are not inline with our values. They DO NOT indicate intent. OCD is an anxiety disorder and often focuses on the worst case scenarios - which for many people is harm coming to their loved one and them being the one to do it).
Medical staff may knee jerk and contact social services. People's jobs, training, etc are occasionally put on hold while policies are followed. It shouldn't be that way for us guys who already have such a lot to deal with but occasionally it is. I had child protection and social services mentioned to me when I tried to disclose the nature of my thoughts to a midwife. I've come to terms with it by trying to understand why. It is their job to protect a child. If I was in that position, and didn't understand the nature of OCD, I would want a comment like that looked into further too. Work places, universities... everywhere has guidelines and health and safety protocols and they're not all correct and up to date.
If this happens to us, there are things we can do. We can contact the charities, they have advocacy services which support people in situations like this. These incidents do get resolved, they're not forever, but they can be very upsetting. Don't let this put you off of seeking help. Contact the charities about how you can go about seeing your medical practitioner. Many advise that if you're worried about disclosing some aspects of your symptoms or thoughts then don't at first. Just explain that you think you have OCD, that your symptoms are very upsetting and interfering with your everyday life,
and wait until you are referred to someone who understands the condition better before opening up fully.
Remember you can always ask them how much they know about OCD as well. Your medical professional needs to be a good fit for you too - you're the boss!
If you have any more questions about this please contact OCD Action, OCD- UK or Maternal OCD - they are the fonts of all knowledge about this.
And that age old discussion about misconception...
I wrote about this once before and promised myself I'd never cover it again but some of your messages make that promise really difficult to keep to - I've learnt a lot from what you've told me.
Many of you have spoken about how upsetting you find the misconceptions surrounding, and trivialisation of, OCD. Whether it's the throw away comments where OCD is being used synonymously to describe perfectionism or fastidiousness, or the Obsessive Coffee/Christmas/Cat Disorder type products that cause misunderstanding.
Many of you have said that it means your family and friends do not take your condition seriously enough. Sadly as well, many of you had initially discounted OCD as a possible cause of your symptoms because of the misconceptions surrounding it - this often led to years of additional upset before you finally got a diagnosis. I've heard also from medical professionals who state very clearly that the assumption that OCD is a quirk causes a great deal of issues for patients - they've seen it themselves.
I've always been a big believer that the best way to spread awareness is through sharing our stories and experiences. As soon as correcting others starts, we run the risk of attracting the wrong kind of attention - think snowflake, pc brigade.......... HUH?! Sorry, I fell asleep there for a minute. :-)
I have to be honest now though and say, having read what I've read from your messages, I can no longer sit back and not question those products. I haven't even tried to - something needs to change about the way OCD is referred to and represented and it needs to happen soon.
If you follow my social media accounts you will see that there have been huge developments in challenging these misconceptions and trivialisation. The past two weeks alone have seen the likes of T K Maxx, Not on the High Street and many other smaller stores remove items that play on the words or characteristics of OCD. In my personal opinion it's not about offence. Asking for these products to be removed is, for me, about making it easier to spread awareness of actual OCD and to stop the trivialisation of the condition creating havoc for future members of our community who are currently desperate for help yet assume they couldn't possibly have OCD. I mean after all it's that quirky condition that involves a love of perfectionism and gives an endless sense of joy when things are 'just right.' What THAT OCD? No way!
I'm sorry if I seem a little ranty - it's passion... with a side helping of frustration.
Now back to the positives. For a lot of last week, emails were flying between myself and the wonderful Ashley Fulwood - CEO of OCD-UK. The ball is certainly starting to roll on challenging these products. Ashley has created a OCD-UK pledge which will be sent out, initially to the top 100 retailers in the country, politely asking them to sign to state they will not stock products that add to misconceptions about, or trivialise, OCD. There will also be many offers to help educate those companies too. It's a really positive step towards more discussions about real OCD, and a society that understands how devastating the impact of the condition can be. For more information about why OCD-UK challenge misuse please see here
With both the big national OCD charities, medical professionals, advocates and those living with OCD backing this new push towards awareness it is really exciting to see all the changes that are happening. It feels like a new chapter is beginning and I'm really excited to be a part of it.
Okay, I think that just about enough from me. I spoke to the wonderful Stuart Ralph on the OCD Stories podcasts for the second time last night ( I know - pinch me!) and went into loads more detail about how to help spread awareness, how to support the OCD community and how to look after yourself when sharing your story and dealing with the press. I also cover my experiences of the articles coming out, how to get help if you're a parent with OCD and lots of other things.
I'm about to update my 'Talking to the Media' post so please keep an eye out for that and as always, I'm constantly updating my Contacts and Information page so please check that out too. I'm always finding new helpful things and adding them to that list.
I want to end by saying a huge thank you to the people who have supported me over the past few weeks, I'm not naturally someone who likes the limelight and attention and even though I wouldn't change anything for a second I do recognise that the old blood pressure has been up at times and my support network has been brilliant. Ashley Fulwood OCD-UK , Olivia Bamber OCD Action, Maria Bavetta and Diana Wilson from Maternal OCD, Stuart Ralph from the OCD Stories, Elvis Gomez (who incidentally is doing research at the moment, you can find out more information here), my incredible husband Pete Benfield and son William Benfield - your hugs have been very much appreciated. Nina Newman, the bestest pal a girl could ever want, Hayley Carlile and Mo Wood - teaching buddies who have gone out of their way to support me since day dot and a tonne of other absolutely brilliant people from both inside and outside of the OCD community and of course all of you who wrote to me, read my posts and support my work on social media.
I'm one lucky lady.
I hope this post finds you well. 😊