Here is a story about the worst treatment I have ever received in a hospital. Two years ago, an emergency room nurse was about to access my chest mediport (a plastic catheter surgically implanted in your chest or arm) to start an IV (due to sclerosed veins, my body cannot sustain traditional IV’s) when I asked the nurse to please maintain the sterility of the procedure. I was concerned because I lost three previous ports due to infection. The nurse’s response, bless her heart, was to ask if I infected myself by injecting heroin in my ports to get high.
I was offended in a way I never expected, and irony is that nurse colleagues likely infected my ports over the years. The failure to ensure a sterile field during insertion, dressing changes, or needle access was the reason I lost my ports, not some action I took, especially from drug abuse. I do not even drink, so heroin usage was a definite non-starter. To accuse me, after knowing me for 15 minutes, was totally out of bounds. Where did she get the idea I used heroin? What was it about me that said heroin abuser? Was the nurse aware mediport infection is common when improperly accessed and I lost my three ports over a 12-year period. No, she likely knew none of those things, she just eagerly choose “her foot in the mouth” status without little thought before comment.
The Same Ol’ Song
Sadly, SCA patients have heard these negative comments from doctors and nurses for years. If you browse SCD social media sites, what becomes abundantly clear is the frustration and anger felt toward the medical establishment. The anger is real and justified; the question is how should the community respond to medical staff mistreatment.
Sickle cell patients have complained about extended emergency room delays, accusations of drug seeking behavior, insufficient pain management, hospital rules administered to all but made specifically for sickle cell patients. Even nurses asking “why do you take so much pain medication,” or ”How much pain are you in? You look fine!” So anger within the community is understandable, I myself have felt it, do still feel it. I just think we need to be strategic in how we express it.
Every SCA warrior must realize the connection and obligation we have to each other. We are a community, and we suffer and prosper as a unit. Entering an ER a warrior faces the collective legacy left by previous sickle cell patients. Nurses have said to me “You’re one of the good ones.” That is not a compliment; it is insulting to the sickle community and me. It makes me think of that old Ice Cube quote from his Death Certificate album “here’s what they think about you!” So knowing hospital staff are judging the SCA community, SCA patients should go out of their way to be good patients. To keep their living area neat, maintain a respectful tone during conflicts and if you have an issue, ask for the charge nurse or a hospital administrator to voice your concerns. You are more likely to get results, and you avoid earning a negative reputation, something useful during future admissions. Yelling and cursing out staff, leaving the hospital against medical advice or other incorrigible behavior hurts you and hurts the collective reputation of us all. It does not matter if the patient had valid reasons to be frustrated
Your Authentic Self
Finally, frustration and anger can exacerbate the intensity of a crisis. Therefore, conflict with staff during hospitalization is counterproductive to your health. We all respond to kindness, it melts the roughest exterior. Being respectful and thoughtful to your caretaker is a good habit for all patients to adopt.
We are not asking sick in pain patients to put on a show to con your caretaker, we are just suggesting you offer your best self, despite the mistreatment you may receive. The doctors and nurses who cross the line are responsible for their own actions. They are answerable for their own behavior, and you yours. All the sickle community can do invoke change is work to erase the stigma that stains the disease.