No matter what, I will never be able to have everyone in my life understand my pain
Complex Regional Pain Syndrome, formerly known as Reflex Sympathetic Dystrophy. They renamed this complex and mysterious disease, in an attempt to make it easier to understand and identify. No matter what they call it, this disease remains for the most part, unknown and unpredictable.
For that reason, there will never be a time, when everyone in my life, or your life, will completely understand what we are going through. How could they, heck, I do not even totally understand, and I have been learning about this for disease since the day I was diagnosed, in 1996. (My accident was in May 1996, diagnosis was in December 1996)
If after all these years, I am still unable to completely understand what this disease is doing to my body, how can I expect others to understand? Yet, that is always our goal, isn't it? We share stories with our loved ones, of other people we have met in the support groups, thinking that if we explain it to them, and tell them that someone else has the same pain, same symptoms and same breakdown of the immune system...they will understand.
The best we can do, really, is give our loved ones the facts, as we know them. Clear and simple information, and allow them to go through all the emotions that are natural for someone who is helpless to help their loved one, when that is the one thing they want so badly to be able to do.
I AM NOT SAYING that no one in your life will understand...ABSOLUTELY not saying that. I am only saying, please keep in mind that there may be some of your loved ones, close friends, coworkers, etc., who will never understand what we are dealing with.
What I have learned, over time, is this... CRPS is a disease that gets worse when we are stressed, emotionally or physically. If there are people in your life that only add to your stress, and never add to your comfort, it may be time to distance yourself from those people. I am not saying to never see them, just limit your contact, limit the length of your visits, so that your stress level does not go overboard, causing undo pain to you in the end.
Just my opinion, just my experience.