Finding your tribe/community - contacts and information
My absolute, number one priority for Taming Olivia is to help people living with OCD, and a huge part of that is getting the right information to the people who need it the most. I’ve been asked a lot recently about where I go for information, what has helped me the most, what books I’ve read, etc so I’m going to drop this here.
These are some of the main places, people, charities and organisations that I’ve been to for help or information. Whether it’s to speak to someone or to read through websites and other materials, the following have all been really helpful.
This list is by no means exhaustive and please, please, please if you know of something that could be added to it, or if you'd like to be added to it yourself, message me and I’ll put the information on. Or add it to the comment section at the end of this post. It would be fantastic if this could be a collaborative effort.
Please use this blog as a reference text. A copy of it will remain on my website under Contacts and Information.
*Just a quick note to say that in England if you are feeling very poorly you are advised to head to your local A and E department. Or if you have been given a crisis number by your Dr to ring them and they can get help to you. Please do this if you need to, there is no shame in it, I’ve done it. It takes a strong person to realise they need support. You’re far too important not to ask for it.*
So here we go…
Websites and Organisations
The International OCD Foundation - https://iocdf.org/
This is a one stop shop for learning about OCD and the information it holds will probably answer many of the questions you have about the disorder. It’s American based so their lists of therapists and courses are somewhat limited for us in the UK but you can’t beat this website for educating you on all things OCD. There’s also a huge section on OCD in children so if you’re a parent or carer this information could prove invaluable.
The OCD and Anxiety Center of Baltimore - http://www.ocdbaltimore.com (and basically anything Jon Hershfield)
Again, it’s based in America, but this too has valuable information on it. What I like most about this website is that it first introduced me to Jon Hershfield, I have so much respect for this man. He has an uplifting attitude towards living with OCD and recovery. Go to the website, read his blog and watch his YouTube videos (just Google these). He has a calm and positive manner and you can’t help but feel better after reading or watching some of his posts.
OCD-UK - http://www.ocduk.org/
This website has a huge section on OCD. It also has links to blogs and personal stories by OCD sufferers and a very supportive group network. It hosts conferences around the country and have just started doing web-based seminars. This and OCD Action are must-visits for us in the UK.
OCD Action - http://www.ocdaction.org.uk/
This website is great for us in the UK as it suggests groups and meet ups that are accessible to us. This website also houses a forum for people to discuss their conditions (remember to use caution when reading forums as they may contain many triggers).
The OCD Stories - http://theocdstories.com/
Created and run by fellow OCD advocate Stuart Ralph, this website is amazing! He discusses OCD with a range of professionals in the field on his podcast and posts stories written by those living with OCD. He is very much focused on recovery. He shares the strategies he uses and covers the new types of therapies and research out there. Have a look, his site is incredible, if nothing else (which I doubt) you’ll be left with the overwhelming sense that people living with OCD can achieve anything they want. This guy is really inspiring and this is one of the websites that helped me the most.
OCD Youth – For and by young people with OCD - http://ocdyouth.org/
I believe part of OCD Action. It's aimed at raising awareness of OCD and providing support for those living with the condition under the age of 25. It includes information about the support you can get from school and university along with age- specific help. This is great as it includes information not always available on other sites.
Mind – The Mental Health Charity - http://www.mind.org.uk/information-support/types-of-mental-health-problems/obsessive-compulsive-disorder-ocd/#.WNEd4zvyjIU
Mind is an amazing charity. They are the people I would turn to in times of crisis or if I needed support and advice immediately on anything mental health related. They give legal mental health based advice and housing advice as well as general support. They are a bottomless pit of contacts and support groups. Mind covers all forms of mental illness and has a large section on OCD. A great charity and a very helpful website!
The Mighty - https://themighty.com/?s=ocd
I find this website very informative. It contains stories and articles written by people living with a disability or illness. There is a whole section on OCD. The posts are edited before posting so they tend to be not only interesting in content but well written too. If you’re looking for people to identify with, this place is a great stop.
The Samaritans - http://www.samaritans.org/
An amazing charity. They help people who are in distress, despair or feeling suicidal. I used Samaritans after losing my parents, when my OCD was out of control and I was completely overwhelmed. Speaking to someone who listened made a huge difference, released a pressure valve in me and I didn’t have to worry about putting the load onto a family member again. I will forever be grateful to that lady who spoke to me that day.
Alison Dotson - https://alisondotson.com/ Author, OCD advocate. Her website hosts Q & A sessions with lots of big players in the world of OCD advocacy. She had a great sense of fun and I always feel better after reading something she's written.
Jeff Bell & Shala Nicely - http://beyondthedoubt.com/.
This website focuses on the role of uncertainty and offers e-courses and webinars as well as general information.
Jeff Bell (again) - A2A Alliance - http://a2aalliance.org/advocates/jeff-bell/
The Secret Illness – https://thesecretillness.com/about/.
These guys are on Facebook and Twitter too. They talk about managing OCD and OCD recovery through creativity and their website also includes a wall where people share their stories. You can be anonymous, so if you fancy sharing your story, this is a great place to start. If you enjoy creative activities get in touch with these guys, they’re working on a new project at the moment and are looking for people to take part.
Get Self Help - https://www.getselfhelp.co.uk/ I've used this website to help support the therapy I've had in the past and the homework that I do now. It provides CBT self help and therapy resources, including worksheets and information sheets and self help mp3s
Psychology Tools - https://psychologytools.com/obsessive-compulsive-disorder.html CBT worksheets, handouts and resources.
GP/Dr – I’ll do a separate post on this soon but, for now, this is the place to go if you aren’t feeling low, depressed, anxious, etc. There’s a likelihood you will probably be asked if you want to go on medication, again this is a personal choice – do your research. REMEMBER to ask about therapy and getting on a waiting list. Even if you decide to take medication, it is important to ask your GP what other treatment is also out there for you. They may not always think to offer it or mention it, so it may be down to you to enquire. Some waiting lists can be long so getting on it as soon as possible is a good idea.
IAPT – Improving Access to Psychological Treatment
These tend to be divided into geographical areas and in London it’s split into boroughs so the service you get may differ depending on where you live. This service is a great idea as it cuts out the need to see a General Practitioner and gets you through to a phone assessment for CBT and other talk therapies much quicker. From the assessment, you go into treatment. Again, depending on where you live the waiting list times can vary. This is my local one and an example of what you will see: http://wftalkingtherapies.co.uk/. If you can’t find one for your area contact your GP surgery. They will be able to give you the information. The service may also be called something else in your area, a quick enquiry at your GP surgery will also help you find out what it is.
Break Free from OCD: Overcoming Obsessive Compulsive Disorder with CBT
- Fiona Challacombe, Victoria Bream Oldfield, Paul M. Salkovskis
This book really helped me find my footing when I was in the early stages of learning about OCD. It’s incredibly well written and the authors write with empathy and understanding. They use charts and diagrams and cut information up into bitesize chunks so it’s much easier to sink in. I’ve read it three times now and still find it an amazing tool. It talks about all areas of OCD before honing in on: Checking OCD, Contamination OCD, Rumination (in this case harm) OCD and Religious OCD (I think Americans call this Scrupulosity OCD). It’s an amazing resource to have in your arsenal.
The Mindfulness Workbook for OCD: A Guide to Overcoming Obsessions and Compulsions Using Mindfulness and Cognitive Behavioral Therapy - Jon Hershfield, MFT and Tom Corboy, MFT, foreword by James Claibor
You’ll notice Jon Hershfield again here! This book is an exercise book of sorts and leads you through various mindfulness-based activities It uses a really simple layout and lots of analogies and examples to help you understand the basics. A big plus is that it covers what feel like an endless amount of OCD themes. Again, as with anything Jon Hershfield is involved in I found reading this not only helpful but a positive experience too.
Mad Girl: A happy life with a mixed-up mind – Bryony Gordon
I love this woman! Check out her involvement in the Heads Together campaign. She’s just run the marathon for it and is a true inspiration. She also started Mental Health Mates which is incredible too. She’s funny, witty and honest (sometimes painfully so). A must read for those who have experience of living with OCD without ‘coming out’ about it and for women with OCD who have gone through pregnancy and motherhood. I couldn’t put it down.
The Dialectical Behaviour Therapy Skills Workbook Practical DBT Exercises for Learning Mindfulness, Interpersonal, Effectiveness, Emotional Regulation & Distress Tolerance - Matthew McKay PH.D. Jeffrey C. Wood, PSY.D. Jeffrey Brantely, MD.
Dialectical Behaviour Therapy was once only used for those with Emotionally Unstable Personality Disorder (this used to be called Borderline Personality Disorder and is still often referred to as this) but now it’s also being used to help people living with a range of other conditions too. In fact, I often think everything would benefit in some focused DBT therapy. As someone who has lived with Anxiety, OCD and Depression, I do find that my emotions sometimes have the ability to overwhelm me, and this book is brilliant at helping to teach the skills needed to help manage emotions. It’s written in a very supportive way, with compassion, and the activities in it, both theoretical and practical, are really helpful.
Headspace - Andy Puddicomb https://www.headspace.com/
This app costs money but you can get a lot of information from reading the articles on their Facebook page or website. It has a beautiful calming design and uses fun animation to help you learn the basics of mindfulness and meditation and helps you progress in steps. The app is divided into sections depending on what you want your outcome to be, there’s both an anxiety and depression section which may cross over to us with OCD. Downside – it’s not cheap. They do say they give away free membership to people who need it so it might be worth contacting them. If all else fails, they have a free 10 sessions taster that I found really helpful and you can listen to that as much as you like. It’s a good starting place, his voice alone has me close to a state of deep relaxation, it’s very calming.
There are free mindfulness and meditation apps available too.
nOCD - Treatmyocd https://www.treatmyocd.com/
This is the brainchild of Stephen Smith and in the company's own words it’s ‘by OCD people, for OCD people’. This app was designed to address the lack of OCD therapists, and long waiting lists. It helps you monitor your condition and takes you through a series of exposures that you can do depending on the type of obsessions you are living with. If you get a chance read Stephen’s story too for another inspirational read. At the moment, the app is only available on iPhone but it is heading to android soon.
Chrissie Hodges - https://www.facebook.com/ocd.chrissie OCD survivior, advocate, author and public speaker.
Shannon Sky - https://www.facebook.com/Shannon-Shy-OCD-Can-Be-Defeated-Im-Living-Proof-428444560551203/ OCD survivor, advocate, author and public speaker.
Elizabeth McIngvale - https://www.facebook.com/peaceofmindfoundation/
OCD survivor, advocate, author and public speaker. Founder of The Peace of Mind Foundation. http://www.peaceofmind.com/
Paul Salkovskis - https://twitter.com/psalkovskis Professor of Clinical Psychology, Researcher and author (one of the authors of my favourite OCD related book 'Break Free from OCD' - mentioned under book section.
Maternal OCD charity – https://twitter.com/maternalocd This is an amazing charity, run by ladies who have lived with Maternal OCD.
Rosy - https://twitter.com/PNDandMe This is the lady who does the Wednesday evening slot PNDhour. It’s amazing and there are often ladies who have lived with, or are living with, Maternal OCD.
Richard Taylor - https://twitter.com/RichBiscuit21. Mental Health Advocate and Chair of OCD Youth Action Project
Adam Radomsky - https://twitter.com/AdamRadomsky Psychology professor and CBT therapist, focuses a lot on OCD.
Some extra pointers
*There are whole communities of people living with OCD out there on the internet. If you’re a Brit, the twitter community is tight knit and very supportive. I’m not sure about other countries, only because I’ve not looked into those as much but there will be something out there. There will be LOADS of people on social media who are not on these lists on this page. I deliberately only included the people who are in the public eye already. To find others, keep an eye out for those talking about OCD – you’ll soon find lots of other people who have been through the same as you and understand the journey you are on.
*If you #ocd in twitter/instagram/facebook a load of people come up and you can find people who have lived through similar to you. It’s what I did. Please just ignore the ridiculous tweets by people who still believe sorting jellybeans is a form of OCD. I am seeing less and less of these daft posts as the days go by - but for now, just overlook them and go to the posts that will help the most.
*If you put ‘OCD support groups’ into Facebook a lot of groups pop up that you could request to join (again, miss the daft ones based on misconceptions). I know people who either love these groups, or find them very triggering, so you’ll need to check them out for yourselves.
*PLEASE remember that although it’s fantastic to find people who have been through the same as us and to feel the massive relief that we are not alone, it is also essential that we focus on recovery. Try not to spend too long caught up in chats about how hard life with OCD can be. Yes, there’s a place for that too, but try to use the groups for hope and recovery ideas and if you’re coming away from them feeling defeated rather than hopeful it may be time to leave that particular group.
*Most websites are available on Twitter, Facebook, Instagram, Youtube etc too. Familiarise yourself with the icons for each and if you find them on a website you are reading from, you can click on the icon and they will take you straight to the social media sites. From there you can follow each organisation/person. You will get notifications from them when they post rather than having to keep checking the websites.
*Whilst searching, you're likely to come across the term 'Pure O'. Everyone seems to have their own opinion about whether this term should be used or not, but basically it is used to refer to someone who has internal compulsions. They do not visibly display any outward signs of compulsion but will do so 'internally'. Examples of internal compulsions are things like scanning memories for evidence, seeking reassurance through memories of previous experiences, etc. The term is often the subject for heated debate, but it is basically OCD.
Ok, so there you go. I'm learning loads more all the time so I'll add them as I go along. I really hope you find something from these that helps you. Oh, and one last thing, these are the places that helped me. There are plenty of other areas out there that I've not yet discovered, but for now, I hope this is a good starting point for you.
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