The Sting of the Stigma

Hello to all of my readers. I'm coming to you in a serious mood. This topic is one that is well-known about but very much so taboo. Its the stigma of sicklers (person with sickle cell disease-as we are self dubbed and affectionately referred to)being DRUG SEEKING. Those words are exactly what they imply but just to define to void any misunderstanding i will provide a definition in this specific context: Drug Seeking-a person who goes to hospitals either lying about symptoms or exaggerating symptoms of pain/discomfort in order to receive narcotic drugs (i.e. pain pills, IV medication). Due to the fact that sicklers are constantly in and out of the hospital and usually on some sort of narcotic pain medication, the stigma of us being drug seeking was formed. Personally, I've taken narcotic medication for pain since infant/toddler days. In this common case (not just with sicklers, just general science) a tolerance is built up which just means stronger or higher doses of medication are needed to control pain symptoms and provide pain relief. Keeping all of this in mind, it is often seen that nurses, nurse practitioners, physician's assistants, doctors, hematologists, etc. adapt this way of thinking. Sometimes they will verbally express their belief that a patient is drug seeking, other times they may hint at it through snide comments/remarks, then there is the general attitude that conveys this message. Just because medical personnel doesn't overtly say, "I think you're drug seeking" does not mean they don't believe that. Besides, 75% of all communication is non-verbal. Not only are these accusations rude but hurtful and can result in some sicklers fatality inadvertently. I mean picture this scenario: you've been in pain for a week straight, biting the bullet going through daily routines, trying to take medication to relieve the symptoms; however, it does not always help and mostly cause unfavorable results (upset stomach, diarrhea, fatigue, nausea, headache, etc.). Finally you say you cant take it anymore and go to ER because there are no sickle cell day clinics for treatment. While there you spend up to 2 and a half hours between being in the emergency room and triage protocol. Then you get admitted and the person responsible for your healthcare throws out comments like "you must be here for the drugs" or maybe they are reluctant to even treat you-leaving you no where to turn. I remember at my personal hospital we were fortunate enough to have a sickle cell day clinic where patients were able to go to receive fluids, blood, pain medication from 9am to 4pm to prevent or treat a crisis. If you felt better you went home, if not you got admitted. Over 200 sicklers utilized this resource; however, there were only 4 rooms making that a total of 8 beds-- not much of a resource huh? But nevertheless it was ALL WE HAD....until even that closed, forcing sicklers experiencing crisis to go to the emergency room. Then when you get there you're falsely accused or judged for something as harsh as being drug seeking. Yes I do understand that there are drug seeking sicklers as there are in every disease pool; however, this gives no one no right to judge every sickler in that manner. Its categorizing, stigmatizing, discriminating, judging and unwarranted--not to mention worse of all its hurtful and can yield very dangerous results. For example, imagine this has been a trend in some sicklers life and they are tired of this experience of being in pain and not being believed, being looked down on, talked to in a condescending manner, treated as if they were inferior. Next time a bout of pain comes on they are apprehensive to seek treatment in order to avoid this. Two outcomes are available. One: the sickler dies without ever getting treated. (or). Two: the sickler finally gets treatment but its too late and they die at the hospital or the damage done from waiting is irreversible and the complications they have to deal with are now lifelong in addition to the disease. This is one of the reasons I started the blog, to dispel myths and rumors and stigmas such as this one. To expose what is happening unjustly in the sickle cell community and to evoke empathy in those without the disease. We don't want you to feel sorry for us, no we don't want your sympathy; we want you to understand, put yourself in our shoes/position. Sickle cell soldier signing off. Please comment.