For some reason, the medical profession, especially in the US has a limited view of sickle cell. First of all, they think that people with the trait can’t have pain—THAT IS A MYTH! Just because they don’t have the full out disease, doesn’t mean that pain doesn’t exist in the life of a carrier too. On the sickle cell forum, I heard about the guy on the East Coast that has had the trait for YEARS but kept getting told that he couldn’t be in pain.
- You have to find a doctor…just one, that is with the program. Once your doc is on your side, he can write standing orders for you at the ER that you visit. Most people don’t know about this, but it is possible for the doctor to leave standing orders with parameters on your file with the emergency room. That way the ER doc knows what he needs to do to get your pain under control.
- Try using a hematologist or oncologist instead of an internal med. doctor. They have more compassion, especially the oncologists. Oncologists have a better relationship to pain management because cancer pts deal with alot of pain and tend to have high tolerance to pain meds just like we do.
- Stick to the same ER. I’ve noticed that when you go to different ED’s you don’t get a good history. They won’t have you in their records and won’t know your parameters. Also, it will look like you only get 1-2 crises a year instead of 4-6 if you play ED hopscotch. So find one that doesn’t treat you too bad and go there often. That way they will have a thick file on you that they can refer to and realise from your labs that duh, you DO have sickle cell.
- When going to a new hospital, I always take my doctor’s notes and medical folder with me, just in case they try to give me grief. Usually this contains a set of lab work so they know where my H&H usually hangs out at as well as what kind of pain meds I’ve been prescribed. In the medical field, you can never have too much information.
- Always try to have someone go with you, like your mom, sis, friend or man, someone that they won’t walk over that will raise hell to get your pain under control. Your family/friend can be your greatest asset during this, they are your advocate and are there to see to your comfort and make sure things are done correctly. When all else fails, ask for the manager (yes, hospitals/emergency rooms have managers too!) I once filed a complaint with the nursing supervisor against my doctor and nurse, and it went up the channels until the CEO of the hospital came to apologize on their behalf. Never think that you have to take whatever they dish out—remember, you are the customer!
- Empower yourself. Learn as much about this ailment as you can so that when you get in the ED, if you are met with an ignoramus, you will be able to educate them. Just because someone has a medical degree, doesn’t mean they know much about SCD. You are the most experienced person in the room because you’ve dealt with it everyday of your life. That’s a whole lot of knowledge. So don’t be afraid to step up and speak up for yourself.