The pain from a sickle cell crisis is one of the most devastating things I have felt. It is unpredictable and can eat away at you physically, spiritually, and mentally.
The normal response to severe pain is to cure it or ease it, which usually involves taking some type of painkiller. But I’ve never felt comfortable taking painkillers, despite the severe pain episodes I have because of sickle cell disease.
It isn’t the size or quantity of pills that bothers me, although I know many others struggle with this. I’ve had to take many medications in my life, so I’m used to it. What I struggle with is accepting that I need to take pain medication for sickle cell crises in the first place
After reflecting on this, I realized that my approach was irrational. I must convince myself that if I am in pain, it is OK to take medications. But why the need to talk myself into it?
One of the common stigmas about sickle cell patients is that we’re drug-dependent. People should know, however, that over-the-counter medications usually aren’t effective at reducing the severe pain we feel during a sickle cell crisis. The next group of more effective medications is opioid analgesics. Yet some healthcare providers question our requests for stronger medications, due to the link between narcotics and addiction. However, this simply isn’t the issue at hand for sickle cell patients.
No one wants to be labeled a “drug addict.” As patients in pain, we just want to be treated like everyone else. In the past, I have been ignored when I asked for more pain medication for sickle cell crises while in the hospital. Because of that, my perspective about taking medications changed. I didn’t want the stigma of being viewed as a “drug addict,” so I avoided all pain medications and just hoped the pain would pass on its own. That was a bad decision because it led to more hospitalizations.
Having sickle cell sometimes feels like we’re being marginalized from everyday society. I started viewing myself the same way others had been doing. I wanted to be perceived “like everyone else” or as “normal.” But I suffered from a lot of pain and sadness by failing to do what was right for my body.
Trying to be like everyone else caused me more harm than good. Today, after realizing it’s OK to take pain medication for sickle cell crises and severe pain, I am better able to manage those crises. And by raising awareness about this issue, I hope that all sickle cell patients can one day be seen as simply patients requiring care.