Sometimes It's Okay to Be Perceived as Defensive
One problem most SCD patients face is verbal abuse. The things people say to us are sometimes too mean and unfair. We mostly can’t do anything about this. It practically follows us everywhere we go.
Unacknowledged
Years have passed and still, sickle cell patients are being ignored.
The idea that we have become drug addicts, we do not respect, we are too defensive, we know our rights too much, are some of the reasons given to me when I ask why I am being ignored.
What does it mean to "know your rights too much"? Is it not rather a good thing to know your rights and defend yourself when needed? Why is this a reason why I am ignored for a blood disorder that is not my fault (and my parents knew nothing about it back in the 90s)?
It doesn't make sense
Instead of it being applauded that I can advocate for myself at the hospital even when I’m sick, I am punished for it. It doesn’t make any sense, right?
Advocating for yourself is not a crime
Yet, this is what we go to every single day. The misconception that asking for the right medication to make us feel better is an addiction. It makes me wonder how long it’s going to take for people to learn that advocating for yourself in the hospital is not a crime.
You don't deserve it or get used to it
The fact that you are a sickle cell warrior doesn’t mean that you deserve the pain or that you should be used to the pain.
I’ve had sickle cell for over 20 something years and I am still not used to the pain and the frustration that it brings to me every single time. While there are easier ways to take care of pain, most hospitals would rather take the longer route and torture a warrior over and over again in the name of searching for a vein.
Needles hurt!Needles hurt, the number of years you’ve experienced it doesn’t make it any easier.Why do I say this? Because I have been a victim of this circumstance over and over again and it’s beginning to get annoying. No one enjoys being pricked with a needle countless times in search of a vein. Especially when there is a much better and easier option (i.e. pain killer shots).Dear WarriorDear Warrior, If you can relate to this, and I know you do, advocate for yourself. Let them know how you feel and the truth about the pain you feel when poked 15 times before a vein is found to give infusion. Especially when you drink enough water already. Speak up no matter how annoyed they’ll (health workers, family, and friends) will be. Learn to be ok with being called a drug addict for demanding what you know works for you. Note that this does not also mean that you talk to health care workers any way you want to just because you are in pain. But, it is absolutely OK to return the energy you receive from them. For instance, if you politely tell a doctor to increase your pain medication and he responds in a harsh tone telling you that you are a drug addict, and you know very well that you’re not (a survey conducted here on Sickle-cell.com proves that 96% of warriors have never experienced issues with substance, substance use disorder, alcohol or drug dependency), you can defend yourself. Learn to be OK being misunderstood wherever you go, because being misunderstood does not mean that you are not right. Health care workers thinking that they are right does not mean they are right all the time.You have been living with this disease longer than they have been in the medical field, and therefore, you know more about your condition than they ever will. This is your power, never feel intimidated to use it. Ever.Your rightsWith all that has been said above, it is clear that we have all the right to be defensive when and when we have to, especially when we have been given no choice. Sickle cell warriors are genuinely nice people to mingle with if they are not being pushed to the wall.
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