A cure, I know.
Over the years I have recieved many emails and comments from parents and spouses of people suffering from NDPH. The questions are almost always the same. They always contain the same desperation.
How can I help them?
What can I do?
I’m still struggling with the answer.
I want to know that the people around me care about how I am feeling on a daily basis. Then again, I don’t want to be nagged.
When I say “I’m okay.” It really means I’m dealing well. Often though, when I say that, I am met with, “Oh! I’m so glad you are doing better!”
That’s not what I said.
Maybe people with chronic pain have their own language. I seem to. Unless I go into great detail about how I am feeling, people don’t get it. And when I go into great detail, they get discourgaged, walk away and don’t ask again for a very long time.
Don’t walk away.
Don’t ignore it.
Don’t pretend the pain doesn’t exist, but don’t focus on it all the time.
Help me get my mind off it.
Ask me what I need, because it changes day to day, hour to hour with the pain.
If you look closely, you can see where someone is struggling. For a while, when my girls were younger, a nap would have made all the difference in the world. Once, a friend took the time to research for me. I felt so incredibly supported and realized that I was really lacking the support I needed on a regular basis.
Our experience needs to be validated. DO NOT minimize the pain or the effort it takes to get through the day. DO NOT compare NDPH to that migraine you get once a month. It’s not even in the same ball park.
NDPH makes the people around us feel out of control, that is, if they fully get it. And maybe that’s the closest to our world that they will ever get.
Good for them.
What do you need? What would you tell your spouse / mother / friend to do to help, if you could be totally and completely honest?
Please share your thoughts in the comments.