I love this image. Just makes me think about the reality of chronic pain and what we actually choose to express about chronic pain. Keep in mind I am a rather reserved, private introvert so what I choose to reveal about my existence, aside from this blog, may be different than what you choose to reveal.
I think there is a vast level of understanding with our loved ones gained through time, experience and visually seeing our condition that is not gained by others. Therefore for others to even have a tiny bit of understanding into what our existence entails means we actually have to tell them things.
I have talking about this before. There is a certain level of revealing and concealing with invisible disabilities. We can choose how to present information and when to do so. Or not to do so.
We might, for example, choose not to express a lot to a prospective employer for obvious reasons and maybe never give them much information. Or we might choose to carefully give them just enough information. With my last job I expressed that I had chronic migraines because I knew that it would affect my work life. I did not express that I had fibromyalgia right away because there is stigma related to it directly and it would not affect my work life. I did some time later when it was established it didn’t, but by then it was firmly established the Migraines Did. Unfortunately, they had gotten worse rather quickly so that did not help at all.
Friends are another example. We might want to be completely clear that we cannot go out all the time, may cancel quite often and have difficulty with ‘spontaneous’ outings. But we really have choices in regards to how much of our reality we want to reveal, because these are people we enjoy the company of and actually relieve our stress. To me, I don’t like to bring the facts of my existence into that. It comes out from time to time but I don’t like it being an issue. Unless those friends also are dealing with chronic illness and then I am fine with talking about our mutual realities.
But that does not change the fact that the chronic pain reality I experience is different than what I Tell people. Before I tried to commit suicide I did not go around telling people I was desperate with pain, that I could not cope and I had no hope at all that it would change in the future. Because that is depressing and I am fully aware people do not want to hear these hard depressing truths. And so it came to a rather large surprise to everyone that I tried to kill myself to escape the pain. Not a surprise to me. I had suicidal thoughts for quite some time. In the different ways they occur… like wouldn’t it be nice if I just died of natural causes right now. To more extreme.
So when I think ‘You can’t handle the truth’ I am talking about the deepest darkest experiences of living with chronic pain constantly that takes its toll on us. I have only ever expressed those to people I love, usually when intoxicated, which is a very rare occurrence. People cannot handle the truth because they have no idea what to Do with it when you tell them how extremely difficult it actually is to live in such pain and how they affects your thinking and mood. And you don’t want them to Do anything. You simply want to share this reality. I share it here. And I am fine with that. I share it in chronic pain groups because they have felt the exact same things. But you tell someone else any of these feelings that come with this existence and you just get this perplexed look because they can’t understand why you would feel that way. Why do you feel worthless? You are not worthless. Well, I feel that way sometimes when I think of all the things I could be and will never achieve. Sorry. Just the way it is.
And there are a vast number of people out there that I will never, ever come close to revealing one bit of this reality. I will just tell them facts. Chronic migraines are more than 15 times a month. I will spit out facts so they understand I am not an anomaly in this. That it is difficult to treat. That I am doing as much as I can to manage my pain. And thank you I have tried that thing you mentioned and, no, it did not work. Facts though are not my existence or experience. They do not help people grasp what I am going through, they simply help confront the obvious preconceptions and stigma they have associated with chronic pain or specific conditions of which there is many. Knowledge is power. It is useful. But it is not feeling. It is not what I go through.
We have that power to reveal aspects of our story and conceal them. And we have the option of choosing where to do so. How to do so. I choose this blog and support groups. And I also reveal in different ways to different people. I think sometimes when we say ‘You do not understand my pain’ we have to remember we never reveal it in its entirety. Just fragments. Maybe no one can truly grasp this story without having experienced it because it is a deep, deep story that can never be completely expressed. Or at least that is what this rather introverted, private recluse thinks.
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