When you live with chronic pain, your definition of “being okay” takes on new meanings. The pain scale doesn’t really apply since we’ve gotten so used to it that an 8 is now a 4, but that doesn’t mean that the pain has lessened, it just means our endurance has grown.
This morning I experience very sharp pains (very similar to the ones I had when I had appendicitis). I couldn’t walk. It hurt too much to breathe. My spouse saw me sitting down, holding my lower left side and asked how I was doing. My answer? “If I still had an appendix, I would be panicking right about now, but since I don’t have one anymore, I’m good.”
This sounds perfectly normal to someone who deals with pain on a daily basis, but it sounds a little crazy for a person who doesn’t know what it’s like.
The fact that we get used to a lot of the pain and only start complaining when we go off the pain scale may be one of the reasons doctors often dismiss what we feel. They often think we are exaggerating because they compare us to regular folks who would have gone to work if they wake up with pain that makes it almost impossible to walk or makes them throw up. We keep going because we don’t have a choice. It doesn’t mean we don’t cry, it doesn’t mean we don’t despair, it doesn’t mean we didn’t wish for a pain-free day. We go to the doctors to find a solution, to make our lives better, to get more “spoons”. We are incredibly strong, that doesn’t mean we should get access to help.
The fact that many chronic illnesses also cause mental illness doesn’t help. Unfortunately, doctors aren’t free of stigma. This is why it is so important to keep talking about our experiences until people finally understand.