Recently I was quoted in an article… the quote was not entirely what I said and I wanted to take this opportunity to clarify here.
My actual quote was – “I believe that when people say ‘let’s unite’ what they mean is ‘everyone follow me or I have a project that I want you to participate in, if you don’t then we are not united’. There are too many aspects of the chronic pain that need to be done to make it better for all of us. It will take us all, doing what we can. We, as humans tend to want changes done ‘our way’ or not at all. Very few (especially leaders) will not just lay down and go with the flow. Especially if they have an idea of their own. On top of that, healthcare/paincare is so particular to the person. Because there are hundreds of treatment options and thousands of pain diseases, there is no one way to ‘UNITE’ and as soon as you say, we’re united know, you are not. Not everyone wants the same things you do, but we are all part of the same community, it is one we are not in by choice, but by circumstances. There are 1.5 billion in the pain community worldwide. We don’t all speak the same language, there are different laws and customs that need to be addressed. If you want to be the biggest help for yourself and other patients do what you can do to help those you can help and know that there will be some who don’t want help or believe another way is best. It doesn’t make them not part of the pain community. We all make a piece of a puzzle, we are all a part of the same puzzle, to solve it we need each piece, but not all pieces connect together. Find or create your niche and work to make a difference, fulfill your goals, and be the best you can be. Be good to yourself, be good to others (even if you disagree).” – Barby Ingle
For far too long people have been ascribing what they interpret I say, or someone says Barby Said… and they take it as fact when I did not say it. In the case of the article I am referring to here was not a bad article, it just was not totally accurate. I never said the chronic pain community which I am part of) was a gig saw puzzle. I actually didn’t say jigsaw puzzle. I also didn’t say that some pieces don’t fit. You can read above my feelings on when people say ‘unite’. This is a psychological tool many writers do to make a certain narrative fit their article. There are so many aspects of living with a chronic pain condition (or more than 1), we all want different things on the micro level and that is personal to each of us. On the macro level, I want access to proper and timely care for all humans, no matter the cost, care choices etc. I know not everyone wants the same, that is quite ok. But please dont say, she said/he said out of context. If I had to name a tyupe of puzzle for better understanding of what I meant, I would say a 3.D puzzle because it is more intricate, and dynamic.
That’s all for now… back to isolation from COVID19. Still healing from Valley Fever.
