There is a great discussion over at the Ning Sickle cell board over coping when you are in the hospital in pain and doctors don’t believe your pain and ask you what your doses of pain meds are, and when you tell them, they respond “Oh that’s too high, that can’t be right, I’m only going to give you half of that or less…”
Usually, they ignore whatever you say, and go by whatever they feel is right—which ends up leaving you in more pain, or have your pain and anxiety increase. One of our members detailed a very sad experience where she was admitted to the hospital and was in pain for 4 days!!! The doctor pretty much ignored all her requests for better pain management. I’m sure we all can relate to that in one form or another.
Remember, you have to be your own advocate!
If you are ever in a similar situation like this (and I hope you aren’t), take a page from my book. I called the Operator, asked for the Quality Improvement or Risk Management office and left a very upset message. I also told the priest, a social worker, and the Unit supervisor. I complained to everyone that came into my room and raised such a ruckus that eventually the CEO of the hospital and the Chief Medical Officer came down to apologize profusely. After that I was treated like a VIP and all my needs were taken care of. Remember, a squeaky wheel gets the most oil. Take that pain you are feeling, cry, scream and make everyone realize that you are there and in pain. It’s usually when someone higher in the chain of command gets involved that stuff happens.
It’s sad that people with cancer have their pain managed better and are treated with dignity. Sickle Cell warriors are treated like drug addicts, stigmatized, insulted, and ignored. When is this ever going to end? Grrrrrr!