Sikcell: People living with Sickle Cell

We still Hope

Dealing with having to take narcotics everyday and the stigma attached...Is it just me?

I am 36 yrs old and I was diagnosised with SCD at the age of 4. Since then I have been on several different medications along with blood transfusions and IV fluids to help control my disease. Along the way I have also developed several other conditions due to my SCD. I also have avascular necrosis, deep vein thrombosis, arthritis and mitral valve prolapse. Everyday I have SOME KIND OF PAIN. Currently I take percocet every 4hrs and I wear a fentanyl pain patch. Most of the time this decreases my pain but because my tolerance for pain meds is so high, it rarely eliminates my pain completely.

I am starting this topic because of a horrific experience I just had this week being in the hospital. I was admitted to the hospital and there was a doctor that came to see me. The first thing he did was ask me about my illness and the different meds I take. When I told him about my daily regiment he stated that there is no reason for a sickle cell patient to be on ANY medications unless they are in a crisis. I tried to explain to him that with sickle cell you have to try to head off going into a severe crisis which is why (at least for me) daily maintenance is required. I also tried to explain to him that I also have other conditions that affect my SCD and if I want to only take meds while in a crisis there is a great chance that at that time the meds won't work. I also tried to explain to him the pain I am in on a daily basis, still to no avail. He made me feel as if I were some type of drug addict looking for a "fix". This is not the first time this has happened to me. I know for me, it is very hard having to take so much medication all the time and never do I get "high" my tolerance is too high for that. I am one of those individuals that experience very real pain on a daily basis and have never misused or abused any medication.

How do you cope with drs. making you feel so belittled? No one truly understands what is like to live with this disease and also dealing with other ailments that arise because of the disease. Is it just me?

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Permalink Reply by Damali Knight on November 10, 2009 at 10:32am

No its not just you. Last year in the Baltimore Sun their was an article related to people with SCD saying that we only go to the emergency room to get high off of pain meds. It also stated that we fake episodes or crisis for the same reason. I think that as intelligent and knowledgeable as a Doctor is suppose to be they are still stupid. They take an oath not to judge patients but still do it anyway.

Sometimes we as patients know more about ourselves and our conditions and have to put these doctors in check, I know I do. I tell them straight off the top what works and what doesn't work and they be like, oh you really do know a lot about your disease and I look at them like I am suppose to know because if i didn't you would kill me by experimenting on me.

All I can say is don't let them get under your skin like that you know your condition and even if you keep getting those responses from those doctors get a lawyer because they are trying to deny you care to control your pain.