I have been wanting to write a blog for many months now but I’ve been putting it off – I’ve been using every excuse known to man but then is that really that surprising!!! 🙂
BETTER LATE THAN NEVER
Firstly I want to say hello and thank you for reading this. I’m hoping to educate you on what it’s like to have Pathological Demand Avoidance syndrome, to offer you some much needed comfort when it seems all hope is lost and, most importantly I think, do all that with a smile! 🙂
My name is Julia, I’m nearly 31 and I live in sunny Devon with my long-suffering partner Paul and our 2 furry babies/cats Ferdie and Louis. I’ve been with Paul for nearly 10 years. He works from home which allows him the freedom to be able to be there for me. I was diagnosed with ADHD, PDA and psychotic episodes when I was about 12. I’ve been on Ritalin (ADHD) and Chlorpromazine (psychosis) since then but I’ve never received any specific help with my PDA.
Life with PDA doesn’t need to be bleak or hopeless. Yes there are things that I can’t do. Yes there are things that I’ll never be able to do but there are many things that I can do. I can share, I can love and I can be honest. Life with PDA can in fact be quite funny – we laugh a lot in this house. I think you need to otherwise it can soon become too much even for those of us as thick-skinned as little old me!
I’ve been toying with ideas on what to write – it’s not easy you know when you have so much to say! One of the questions I get asked the most is “what kind of demands do I avoid” – the short answer is any and all! The longer answer is there really isn’t any set pattern to my avoidance of demands but it’s safe to say that there really isn’t any area of my life that isn’t affected in some way or another by the overwhelming need to avoid. It’s a strange feeling, this avoidance lark, and it’s even harder to explain but if you bear with me I will try. Everything (demands) make me feel an overwhelming pressure inside. Like a very tightly wound spring that will go off if I don’t avoid the demand. If I were to comply then it feels as though I might lose complete control of everything. It’s such an all-encompassing fear but it often goes unnoticed by me – let me try and explain: my need to avoid demands comes completely naturally to me, it’s as normal as breathing. I don’t even notice that I’m doing it most of the time unless the demands are extreme and then I can feel the fear and pressure inside. When demands are high and I’m struggling to cope I often switch off and sleep – it’s the best way that I know to cope and to make sure I don’t go into a complete meltdown. I have honed my avoidance techniques to such an extent that I almost live demand free. Obviously there are many demands that can’t be avoided, both good and bad and both internal and external, but it’s much easier to cope with these now because I have removed so many of the unnecessary demands like working and housework. I’m happier than I’ve ever been – don’t get me wrong, I still have days when I can barely function and I struggle to hold on but these days are reducing all the time, I think this is partly because I’m so aware of my own needs and also my support network is continually growing. I would say that 60% of my day is free of major anxiety. This might not sound like a lot but believe me if you have PDA it’s nothing short of perfect.
I also have a really long list of questions from the “PDA Army” which I will be gradually answering over the coming weeks and months. Some will be easier to answer than others but I will do my absolute best with each and every one. I wish I had a crystal ball and could see into the future but I don’t. I wish I had all the answers but I don’t. All I can do is tell you what’s happened and is happening to me.
So far my PDA journey has taken nearly 19 years – too many years to cover right now but I can tell you that it’s been a bloody hard slog, with a lot of disappointment, some really dark times and some moments where I just wanted to die but it’s also been a journey of self-awareness and acceptance, of fun and friendship, of learning and of hope. I’m happy with me now. I’ve finally realised that PDA isn’t the enemy. Over the past year or so I’ve made so many new and wonderful friends and I’ve helped so many to better understand Pathological Demand Avoidance and to get the help and support they need. Life is good right now, in fact it’s perfect. It’s not perfect in the traditional sense of the word but perfect in PDA terms and that’s good enough for me! 🙂
Next step is the first chapter of my book!
Thank you once again Julia, giving us such insight, into what is sometimes such a hard thing for us caring for our family to get our head round. I feel for the many adults who are struggling to get a diagnosis, I certainly wouldn’t like to explain it though I would have a very good try lol xx
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What a great start. All makes perfect sense to me, and will help many others understand how different life has been for you, but hope that it can be a success too 🙂
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Thank you for sharing you world with us I have a 14 year old son with PDA who struggles daily with life. I am hoping your blog will help me support him xx
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Well done Julia on starting your blog. I’ll be one of the one’s following with interest, you have and do give so much to us parents into the insight into what it is like to have PDA and I for one, thank you for that. Keep up the good work and with spreading PDA awareness. 🙂
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Well done for starting your blog. I think you are going to give hope to a lots of parents out there who are currently struggling and wondering what sort of future lies ahead for their PDA child. As a parent of one if those children I will be reading with great I interest. Thank you for this incredible insight .
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