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  • Catherine Benfield

So you wanna be a stigma-busting OCD advocate?

Updated: Dec 8, 2023

In comic form: A super hero Olivia beats the baddie STIGMA

*** Hi everyone! It’s great to be back, it’s been such a long time! I’ve spent the past few months doing media work, speaking engagements, running the social media accounts, and working behind the scenes. I'm also working on a new project which I'll thankfully be able to talk about very soon, so poor old Taming Olivia hasn’t really had a look in! But that’s changed now! With lock down starting to lift, and my lovely little man going back to school, I’m hoping to be able to carrying on blogging more frequently so watch this space! ***

Info for new and potential stigma busting OCD advocates – pow!

So, you’re either new to advocating or thinking about becoming an advocate…

…that’s awesome! Welcome to the club!

I’ve been an advocate for over four years now and have worked internationally with a huge range of organisations, charities and media companies and I’ve learned a lot! Every week I see new advocates enter the scene and I’m thrilled to see everyone – the more there are of us the merrier! Advocacy can be wonderful; it can also be extremely challenging so I thought I’d write a little something about the things I’ve learned over the past few years. It’s been a steep learning curve for me and I hope it will help you on your advocacy journey.

I’m going to talk generally about the highs and lows of advocacy and then share some of the most helpful things I’ve learnt – so please make sure you read that section. You can jump down to it here.

How has OCD advocacy changed over the past few years? Simply put, it has BLOWN UP. Things that weren’t talked about are now talked about. People are talking about intrusive thoughts openly like never before and that is ground breaking. The realities of OCD are entering into main stream society, through the media, at a rate we haven’t seen before. And there are more options for support online than there ever have been before. Health services at the minute worldwide are strained to breaking point so there has never been a more important time for advocacy.

So, what are the pros of advocacy?

Wow, where do I start here?

As the advocate, advocacy really gives you a chance to think about your own recovery and to be honest about how you’re doing. Writing about your experiences gives you a real insight into what is working and what you might need to adapt. Discussing your recovery journey openly helps you to hold yourself accountable for actually doing the work.

It feels good to help people. Most of us have been through really challenging times, faced misconception, stigma, incorrect treatment, delayed diagnosis... so to help others avoid that, is amazing. It is an extremely rewarding thing to do.

It also turns a negative for us into a positive. It gives us direction. It enables us to turn something painful into something productive and freeing.

You will meet the most incredible group of people. No one goes into advocacy for the money (most of us don’t make a penny) and you certainly don’t do it unless you have a huge heart. You will meet the types of people who will change you and your world for the better over and over again. Knowing these people, means you always have people to talk to who just ‘get it’.

You will have mates and contacts all over the world in next to no time. There’s no tribe like the OCD community tribe.

You will spend your time surrounded by the most up to date knowledge of OCD and its treatment and this will help you in your own recovery.

You will sharpen your skills – be it technology, communication, writing, negotiation, problem solving – you will have lots to put on your CV!

You NEVER know what opportunities will arise as a result of your advocacy – both inside and outside the realm of mental health! You could end up collaborating with some incredible people – you’ll learn a lot from them.

It can be fun thinking of new ways to express yourself.

You will be in the unique position of being able to change other people’s lives for the better.

The challenges of advocacy

Advocacy can be extremely time consuming – whether it’s responding to messages, writing emails, creating social media posts, it can very quickly grow so you find yourself doing more and more. Having people in different time zones means that you could be hearing from people at any point of the 24-hour day.

It can be very stressful and upsetting.

It can bring up difficult memories for you.

You may find yourself in very challenging situations and hear from some very poorly people.

It can have an impact on your well-being.

It is usually unpaid so will need to happen alongside another job.

Social media can be both a blessing and a curse. It’s possible that you may find you are spending more and more time on it.

It is extremely easy to take on a lot of responsibility and stretch ourselves too thin.

So as you can see, there's a lot to think about, but it's always easier when someone who went before you, gives you a hand. And that's hopefully what I'm going to do here...

My top tips for all things advocacy!

1) Make sure you totally understand what OCD is. Sharing incorrect information, no matter how well intentioned it is, can be disastrous for those dealing with OCD. You’ll be surprised how often I see this. A great way of dealing with this is to run things by a professional if you are creating things. For example, I run things past the wonderful OCD charities, my good friend and fellow advocate Laura from OCD Doodles, runs things past OCD professionals too.

There is absolutely nothing wrong with saying you don’t know the answer to something. You can always point people in the direction of others who do know the answer.

2) Under no circumstance should you give advice to people. You can tell them what helped you, and signpost people to support (e.g., charities, professionals) but if you are not an OCD professional DO NOT give advice. I see this happening a lot, it’s so tempted to be able to help in any way you can, but please be careful. No matter how experienced you are, unless you're trained, don't advise.

3) Look after you! We are all in various stages of OCD recovery, and therefore we should be our own MVP. We are dealing with OCD, we are advocating. Absolutely look after you first. Step away if it gets too much.

4) Create clear boundaries and limits and STICK TO THEM. Whether it’s how many hours you put in, or how many messages you reply to… it is essential you have boundaries in place. Write them down, make them obvious, stick to them. You can’t help people - or more importantly - enjoy your life, if you are flat out.

5) Carry a notebook or use a note-taking app on your phone – the chances are as soon as you start advocating you are going to be hit by one idea after another!

6) Make it clear that you are not a professional and available 24/7. I’ve had messages come through at 12am, I’ve woken up to an inbox full of messages. Create a set time to respond and stick to those times. I’ve created really respectful standard responses that I use for when I’m very busy or if I just don’t have the bandwidth to reply to lots of people at once.

Something like… “Thank you so much for getting in touch. I’m so sorry you’re going through such a tough time. I’m unable to answer all of my messages at the minute. Can I please ask that you contact (insert OCD professional or charity here)? They will be able to help you and point you in the right direction of support. I really hope everything sorts itself out soon. Lots of love. Catherine x x

It may feel uncomfortable, but answering every message, especially if there are lots is impossible. You may also find that you are asked to give reassurance, so occasionally one messages turns into many and you end up in someone else's OCD loop. Recommending that they speak to someone trained, will ensure they get the best support possible.

7) Consider turning off push notifications so your phone so you're not constantly alerted to messages or comments.

8) Everything you do should be designed to run alongside the proper professional treatment. It absolutely must not replace it.

9) Consider putting disclaimers in place to protect both yourselves and the people accessing your services or reading your content.

10) Consider how much of your own story you are willing to share (you can get more information about this under the link in the next paragraph). It is so easy to allow passion to take over so you share more than you are comfortable with. This could have implications on your life now and in the future. Just be incredibly mindful of that. Consider the impact on family too. This absolutely doesn’t mean don’t share your story, just try to keep everyone in the loop. You may need their support and understanding later on down the line.

11) Decide what sort of advocacy you want to do. Will you work for the charities as an advocate? Will you go it alone? Will you talk to the media? If you think you might want to you absolutely must read this post here. It’s so important that you arm yourself with as much information as possible.

12) Make sure advocacy doesn’t become a compulsion – are you using it as an unhealthy distraction? Are you seeking reassurance off of others? Are you doing it to prove to yourself you are a good person to try to counteract intrusive thoughts telling you the opposite?

13) Expect your condition to pop up! As soon as I started writing my blogs, I started worrying that I’d left really offensive language in them somewhere. I’ve never worried about this sort of thing before and it really annoyed me because it felt like OCD was trying to ruin the work I was doing. Expect the unexpected – it’s great practise at dealing with uncertainty.

14) Be honest! There is no point in saying that cutting down on your social media time has been helpful if your followers can see you are on it ALL the time. There is no point pretending that you never relapse if you do. Be honest with yourself (and your followers if it feels right). By choosing to become an advocate, you have put yourself in a position of responsibility and that means making sure you don’t spread false information.

15) Keep the integrity in your work in check. No matter how many followers you have on social media, as an advocate you have a responsibility to keep your followers safe. Be mindful of who you collaborate with, whose work you promote, where you send people for support.

16) Be aware that everyone’s experience is completely different. It’s so important we remember that what worked for us might not work for each other. We all have our own constellation of experiences and traumas. We can’t have a ‘well this worked for me, it should work for you’ approach – it has the potential to be very harmful.

17) You will be contacted by so many different people. Be prepared to hear from people who are extremely poorly, it’s unavoidable, make sure you have systems in place to support you and ensure your well-being.

18) Not everyone will be kind. Gah! I wish I didn’t have to add this one. People are passionate about OCD advocacy, and occasionally your work might step on someone’s toes accidentally or offend/upset someone. This could be a fellow advocate, an OCD sufferer, anyone. If this happens, be open minded. Did you unintentionally make a slip up? If so, admit it, apologise and move on. If not, try to explain it, then move on. Or just move on without any action. No one has the right to make you feel bad, if they keep it up remove, report, block. Don’t give them your energy. But try to always be respectful (I’m still learning not to bite back when this happens to me). People who get in touch with you are likely suffering.

In summary…

You know that feeling that you’ve forgotten something? I’ve got that now! I’m positive there’s more that I could add here so if I think of it later, I’ll add it then.

As you can see from all the points above, advocacy is a wonderful thing to get involved in. You can help change lives and you can help change your own OCD journey. It’s not a step that should be taken lightly though, and the more you prepare, and the more boundaries you have in place, the better. It’s easy to come in blazing with ideas, but that can quickly lead to burn out. Advocacy is very much a case of slow and steady wins the race!

I’ve focused heavily here on independent advocacy but please don’t forget that there is the option to volunteer for the OCD charities – this also has the added benefit of you receiving training and having someone to talk to if you come across something distressing or are feeling overwhelmed. The charities are always desperate for volunteers so whatever your skill set, let them know!

Right, that's me done for this one stop shop of all things advocacy! Please keep an eye out for my next blog which is going to focus on the other side of advocacy, so all those wonderful people accessing the services of advocates. It'll include what to look out for and how to keep yourself safe.

Lots of love everyone,

It’s really good to be back.

Cat x

Further Reading

Thinking of contacting an OCD advocate and using their services? Read this post here to help you do it safely.

We cover how to look after yourself as an advocate in our OCD Action Conference 'Finding Your Community' panel here.

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