Sickle Cell Disease: Severe Pain Often Goes Untreated

I was refreshed to read your article.  I am a 35 year old female wiht hemoglobin SS.  I have had two severe strokes and 2 minor strokes called TIA's.  I also have 4 compression fractures in my back and also have AVN in my right hip and CHF.  It is very hard for someone without chronic pain to understand what it really means to be in pain.  I am in pain daily.  I wake up in pain, go through the day with pain, and unforutnately have to try and go to sleep in pain.  And then the cycle starts all over the next day.  I don't understand the concept of being without pain.  I have what I call my regular pain and pain where I need extra help.  That does not inlclude when I am in crisis.

     So many times when I go into the ER and a nurse treats me who doesn't know me I am discrminated against.  The first thing that they see is the color of my skin and think that I am an addict.  I hear so many times " It's not like you have cancer or anything."  They are right I don't have cancer but I have been going through this all my life and will continue to go through it.  There is no cure for sickle cell anemia.

     I receive transfusions monthly and get hooke up to a pump at night that infuses desferal IV through my central line.  People must realize that pain is individual.  Don't assme that I am not in pain or faking because I am not making a scene or screaming at the top of my lungs.  Pain is part of my daily life.  We need more physicians, nurses, and other medical personell to take courses on sensitivity.  So manny times we prefer to just stay at home than to seek out care because we don't have the energy to fight for what we need.  We should not have to convince health care workers that we are in pain.