Sickle Cell is Just as Serious as Any Other Chronic Illness
Last updated: August 2021
Trying to live a normal life is challenging, trying to live a normal life with an invisible, serious chronic illness like sickle cell is even more challenging, especially when very few know anything about it, let alone know what it is. It's anything but normal. Even though sickle cell is very serious, it doesn't get taken as seriously. I call it the "black sheep of diseases" because it doesn't get taken as seriously as it needs to be, and should be. And that's very frustrating and upsetting.
When you think about it there are no billboards, no commercials, bus stop bench signs, nothing that talks about the disease and what it is besides advocating it, and that barely helps. Instead, sickle cellers that live and suffer with it, get stereotyped as being "fakers", "drug seekers", "its all in our minds", "we are not in that much pain we say we in", etc.
In fact, we (sickle cellers) don't like to go to the hospital; or should I say, avoid going to the hospital because of how we get treated. We are already having a battle with our bodies because of the excruciating pain we are already in and then we do go to the hospital to try to get some relief, but then we have to fight another battle with the medical personal to get them to believe of how much pain we are in and the pain regime we usually get...but instead, it causes more stress, anxiety, and frustration on top of the pain already dealing with.
Doctors & the ER
The medical personal makes it seems like it's our fault that we were born with sickle cell and that we are causing an inconvenience to them. We didn't ask for this life, nor want to have to call the hospital our second home, but since we were dealt this hand in life, it's something we have to deal with.
Sickle cell patients compared to cancer patients
However, cancer patients, rarely have to worry about this because they are privileged...or what we like to call, "Cancer Privileged". What is "Cancer Privileged", you ask? Cancer Privileged is when cancer patients seem to get treatment and no questions are asked, while sickle cell patients have to go through basically the interrogation process to prove how much pain they are in and get the treatment they need and deserve. Grant it, they are going through something, but it seems like they don't have to prove what they are going through, like sickle cellers do.
Also as sickle cellers, we are shoved to the side so that the cancer patients can get their urgent treatment. One example of "cancer privileged" is before the pandemic. If the doctor felt I needed to go to the hospital, he would reserve a bed to bypass going to "Germ City", aka the ER, because there have been times I have waited in the ER for 18hrs or more, so this was perfect.
Since the pandemic, the hospital stoped reserving beds for sickle cellers, and only put beds aside for cancer patients so that they can receive their chemo. Now, just like cancer patients, sickle cellers have little to no immune systems and are VERY VULNERABLE to catching an infection; the ER is a breeding ground, but yet if we need to be seen, it's the only option.
Another example with some nurses is that there seems to be a sense of urgency when it comes to giving cancer patients their meds and whatnot. They are practically breaking their backs to give them the relief that they longing for, but don't quite get that, when when it comes to sickle cellers.
Another example which is very upsetting...if there are not enough seasoned nurses (nurses that belong to their home floor), they save the seasoned nurses for the cancer patients because they know how to give chemo and assign a float nurse to the sickle cell patients. This is so upsetting and frustrating because most float nurses don't like to listen and don't quite understand how crucial it is to stay on schedule with the pain meds. That also make us think that our illness and what we are going through is not as serious as a cancer patients' experience.
Discharged too early
What really puts the icing on the cake of "Cancer Privileged" is if I have been here X,Y,Z days, the doctor is ready to kick me out despite if my pain is under control and the pain level is still high. But, because my numbers "look good", doesn't mean I am in the excruciating pain...I'm in and based on THEIR decision that they feel I am well enough to come home. Then they have the nerve to say if the pain is not getting any better, you can always come back.
But yet I'm here in the hospital now. So basically you are telling me you are going to discharge me now and want me to go back through "Germ City", risking getting an infection to get the same treatment that I'm getting now? Yeah, makes perfect sense.
But if a cancer patient has been here X,Y,Z days, they let them stay as long as they need to and no questions asked...even if their numbers look good. They (the hospital doctors) will listen to the cancer patient, but won't listen to me/us (sickle cell patients). And because of the insurance I have...when I am getting admitted, I sign this form stating if I feel like I am getting discharged too soon, I can appeal it. That ain't but a bunch of backstabing (baloney).
I have tried it...matter of fact, tried it FIVE times and have been rejected all FIVE times. And out of everything I have said here, I know race plays a big factor, unfortunately.
Something needs to be changed about this. Sickle cell shouldn't be the "black sheep of diseases." Sickle cell is just as serious as any other chronic illness. We didn't ask to be born with this, it is not our fault that we were born with this, but it has got to stop being the bottom of the barrel.
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