Changing the Image

Okay sickle cell warriors, it's time for some frank talk. I'm sick and tired of hearing how lazy people with sickle cell are. I'm sure that the majority of us aren't...but for some reason, the public has the notion that we are just milking 'the system' for our pain, are too lazy to get a 'real job' and are drug addicts.

You've all heard my rants about public perception and my efforts to educate those I come in contact with. But standing on my soap box will only educate so many. We all have to join together to change the face of sickle cell.

One of my nursing friends who works in Georgia commented that she had worked with many sickle cell patients, and she made a few generalizations which provoked another one of my soap box tirades. But sitting back listening to what she was saying, I realize that although she was overly judgmental and uneducated regarding sickle cell, the sicklers that she had come across had created a bias in her.

"They just go from hospital to hospital seeking drugs. Some lay in the bed for days, sometimes weeks and don't even brush their teeth. They act like princesses, requesting all kinds of food and pain meds around the clock."

Yes darlings, I did set her straight, but at the same time, I had to listen to what she was saying. She's been a nurse for 15 years, and has taken care of scores of sickle cell patients...yet the majority had this 'victim' mentality.

We are not victims. We are survivors. Stop laying in bed having a pity party...it's just a disease. You aren't dead yet, pain is just another fact of our lives, so please, don't whine and complain that it's the end of the world.

Personally, I hate it when people pity me, it makes my skin crawl. So I do everything in my power to avoid that, and draw strength from within, living my life the best way that I can.

I'm in school, have a demanding job, maintain a good relationship and travel constantly. If I can fulfill my dreams...so can you. Having sickle cell is not the end of your world...so please warriors, no more playing the Victim card. It's so not us.

Yes, we fall sick alot, yes we visit the hospital several times a year...but that doesn't mean that we have to enjoy it. Do whatever you have to do to get out of that hospital bed and back to your wonderful life. Being in the hospital is not a vacation or a walk in the park, it's sheer purgatory and you should be doing your best to get out. Whether it's walking, washing up, eating healthy, hydrating etc...do your best to get better and back to the real world.

Live your life and please be a sickle cell warrior and example wherever you are. Do your part to change the face of sickle cell.

Thank you.