When You're Fighting Both Sickle Cell and Social Injustice
Pain is the most common symptom for a person living with sickle cell disease. However, it is often the first thing people don’t believe patients about. Some medical professionals are convinced that the pain is all a delusional cry for attention and pain medication. I believe they are clearly not qualified to make that diagnosis solely based on coming into a hospital room and judging how many tears a sickle cell disease patient does or does not shed. I believe it is much deeper than just thinking of people with sickle cell as “drug seekers.”
In a conversation with a psychologist, who also lives with sickle cell, I learned that some medical professionals are told not to qualify sickle cell patients as a life worth saving, because some doctors believe most sickle cell patients are on disability and considered a waste of space for needing the state’s assistance. This is a social injustice.
How can we be judged for an illness we were born with? Sickle cell patients didn’t ask for this, it was the life they were given. Be that as it may, it is the life we have that more than qualifies us to be our own boss. Many living with sickle cell have a hard time maintaining a job when they go to work for companies, because there are very few people willing to understand the two weeks you need off to get treatment at the hospital and the other week to recover from pain and withdrawal from pain medications. This is why some choose entrepreneurship as a career path. Patients are tired of the misconception that they are not worth the trouble of being treated like normal human beings.
Another issue is the superficial expectation of what people consider a serious illness.“You don’t look sick.” How many times have patients struggling with sickle cell heard those heart-dropping words? This is an invisible illness and a silent killer to some because of those expectations to look exactly how they feel we should.
On the other hand, sickle cell patients should also look at the role they play. There are some sickle cell patients who are judged based on the actions of others. Although it is not acceptable to be treated like the last patient who left a bad impression on the medical staff, the entitlement of some patients that come into the hospitals may also contribute to the judgment by the medical staff. Of course, this is just based on previous experiences with being treated unfairly, but this illness is not well known to all professionals. When they ask for a patient’s help or for an opinion to better understand the illness they are faced with treating, it would help to educate them or connect them with an advocate or doctor who can help achieve a better understanding of treatment for all patients they come into contact with who are dealing with this condition. Being dismissive of those who are uneducated only creates a bigger problem. The reoccurring issue of bias against patients will persist. The prejudice goes both ways in some cases. A patient may think the problem is a race issue instead of a miscommunication that sometimes can be resolved with compromise. The problem with some medical professionals is their belief that sickle cell patients are threats to their medical licenses instead of people who can provide knowledge about the disease. Not only the tone about sickle cell awareness, but the conversation itself needs to change altogether.
Sickle cell patients must first start by educating and empowering themselves. Acknowledge what the problem is and if you are able to help be the solution. Patients know what hospitals are actually hot zones, meaning they more than likely will receive less than adequate care. If you lack the time, patience or general connections to make the necessary changes at that specific hospital, then change the hospital you choose. Travel a little further to a hospital you know will at least follow the NIH guidelines. If you are not aware of the NIH guidelines please make sure you review them and print them for your records. Sickle cell patients should also be aware of their hospital’s patients’ rights and responsibilities, so they are able to identify when they are being treated above or below hospital protocol.
Sometimes a patient can do all these things and still run into problems beyond their control. Shatter those limitations and the preconceptions of medical professionals, and there is hope for change.
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