Sickler is a medical ‘slang’ that is always used to refer to a person with sickle cell disease. It’s a common vocabulary in areas with sickle cell disease. However, many people living with sickle cell disease are not happy being called sicklers. Many prefer to be called sickle cell warriors instead of sicklers.
I have met a number of people with sickle cell disease who do not like the term sickler because they think it is derogatory. They are always correcting a number of health care givers on this issue. My friend once told me that a nurse actually called him a sickler when he was waiting to see the doctor. The nurse had to apologize to him later.
Others think that word "sickler" shouldn’t be used just like you would want to say 'physically challenged' instead of 'handicapped'. I believe it’s our responsibility to correct medical workers or even the public, but our corrections should not waste our precious time. The more we waste a lot of time struggling with correcting people about the word sickler the more the health care will deteriorate. You may try to correct health workers by saying you are a sickle cell patient or sickle cell warrior rather than a sickler, but how far can you go in correcting them? The term 'sickler' does not bother me I feel as though I have more pressing matters to address and won't waste precious time negotiating the medical 'slang' the nurses use in their workspace.
For me sickler doesn’t mean a sick person. It represents the shape of my cells. If those who gave this disease (sickle cell disease) a name had called it crescent moon or half moon and you were called crescenter or halfmooner would you also be against it?
Sickler should define your condition. It should not define who you are. As long as someone has not called you drug seeker, sickler is mostly used to differentiate you from other people but not to discriminate. If you go more into correcting medical slangs sickle cell will start to define you even if you don't want it to. It should not define who you are; sickle cell should just remain part of you.
The term 'sicklers' can have many meanings. It doesn't have to define us if we don't want it to. But getting offended by it doesn't fix anything either. If you don't like the term, then just politely correct them. Whenever they refer to you as a sickler, tell them you don't like that term and explain to them why you don't. Not only does it correct them in the moment, but it'll keep them from using it in the future the next time they come across a patient with sickle cell disease.
There hospitals which understand sickle cell and will be able to listen to you. However, not every hospital is like that and I think that we as a people have to be prepared for those situations. We have to understand that for every hospital we go to, there is going to probably be two more down the line that are the exact opposite. It’s how we handle each situation that defines how they look at us. For each time we go in there expecting excellent care and acting crazy when we don’t receive it, causes them to have one more reason to view us in a negative manner. Not every hospital is going to understand our needs, and it’s up to us to help educate them.
I think main goal should be in addressing the problem of poor treatment. I don't care what people say because regardless people will continue to judge and feel the way they want to feel about any situation. As long as they are providing proper care and not abusing you in any way shape or form then it doesn't matter. I've learned to take life simple. If you continue to waste your time trying to prove people wrong then you are only hurting yourself. Let it go and live your life as best as you can. Best believe that when they come into your room and administer your pain med, the moment they get back to the nurses’ station, they are making you out to be a drug seeker, sickler, faker etc. You can't control that. God is the judge, so let Him judge.
Love Life!
Ssebandeke Asiraf
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