I often have some very interesting questions about living with chronic pain.
Usually, they are questions relating to details that I’ve never thought of discussing, but they are so important.
This page will keep building as questions and answers accumulate. The page may have served better as a community type page but I’d like to monitor the Q&A and also keep contributors’ anonymous. This way, more of you may be encouraged to ask the tougher questions.
Remember, I’m not an expert and I’ll be answering from my personal experience.
Feel free to email me your question. I’ll contact you if your question will be used on the page. Please accept my thanks but also my apologies – I won’t be able to respond to you all.
Q: Do you get people hating on you or teasing you for Pudendal Neuralgia?
I never felt I was teased (or are currently ever teased). In fact, I would walk away from anyone if they had such an attitude – it’s childish.
My frustration has been in communicating the daily abilities/inabilities to the family, friends, people in my local community (and at appointments, to healthcare professionals). No one could really see the physical status by looking at me.
If one day someone saw me buying a litre of milk, they would assume you could accept their dinner invitation.
By looking at me, no one could ascertain that it may have been the first time I was able to head to the shop and buy that litre of milk and manage walking/carrying it home.
I’m quite a confident person. What gave me most strength to build the site (which at the time had to be with 15 minutes of capacity a day), was the encouragement from all the professionals who responded to me when I asked permission to use their research on the site.
I felt I was given a job. I am a graphic designer and so I could put the site together (albeit slowly) and make it interesting. I taught myself WordPress while in recovery after surgery. No thanks to WorkCover for the training. I have funded all of my new skills on my own.
My diagnosing physiotherapist was the most encouraging of all. When she realised I would consider making the website and telling my story, she came to my home and dropped off all of her research and conference notes.
How could I say ‘no’?