It's very hard to digest when a loved one or your partner says they feel you should be fully capable of working because you look like you can, even though they know we are in pain & "sick". We hear this enough from doctors, specialists, strangers, and what feels like every other person on the planet. While our minds race with some form of blame such as "They see me struggle every day" or "They know the pain I'm in!" and the many other thoughts that run through our minds. They all end with "Why can't they understand?!?!?!" or "Why aren't they being supportive?!?!?!" The answer is simply this: as much as they may want to understand, they can't because they are not in our situation, they do not feel what we are feeling. Like the doctors, they only understand what we convey and what we show through our actions. Sometimes our actions do not reflect how we feel because we have learned to "fake it"
Each of us has come to answer the question of "How are you?" with simply "I'm okay" We say this because we don't want to bog people down with our problems and pain, even though it consumes us at times. We push ourselves well beyond our limits because we are constantly learning them. One day, your limit may be much smaller than the previous day or vice versa. We are still discovering our "new normal" because it is forever changing. We want to be our "old selves" so we try to portray that that is who we are, despite what is going on inside & physically. Our "old selves" is what our loved ones see, therefore that is who they believe we are. We fake it so well, that even they are fooled. I think sometimes we even fool ourselves. Can we blame them for seeing what we are showing through our actions? This is not to say there aren't many days that are spent in bed, or on the couch; that many medications aren't taken just to get through the day without a trip to the hospital. When we lay down on the couch or in bed, watching tv or reading a book, we look like everyone else. When we take our pain meds every 3 hrs, even though the prescription says 4 hrs and we just can't make it, are they right beside us seeing it all? Not always, so how do they know?
It is very hard to understand how & why our loved ones don't understand what we are dealing with and going through, but one thing I can tell you is that I am grateful that they don't, because it means they aren't suffering with Chiari and Syringomyelia as well. I don't wish this upon anyone. I may forget to be grateful in the moments that I feel as though I am being questioned, or not cared about, but in the end I can't play the blame game. It isn't fair. Could someone validly blame me for having Chairi and Syringomyelia? The answer is no, because it is not my fault, just like not being able to understand our pain and struggles is the fault of our loved ones. We take it personal sometimes, and we are hurt by it, but we need to step back and look at the big picture. I watched my grandfather suffer from several types of terminal cancer. He withered away into a frail man but manitained such great strength until the very end. Do I understand what he went through? Absolutely not and I believe he would be grateful for that.