Statement by First SCW, Tosin Ola-Weissmann, RN/Masters degree in Nursing, MBA (Health Care Management)
I would say that Sickle Cell Warriors refers not just to the patient, but to the family and caregivers as well as those on the front lines fighting for this disease. We can’t fight this battle alone.
Yes, not every warrior patient has ideal support, but those who do thrive living with this disease are shown to have a strong support system.
Being in the sickle cell fight with us, on the front lines of this disease that affects millions globally, that also makes you a sickle cell warrior.
I Am is one of the most powerful statements a person can make. Warriors, try it yourself…say it aloud. ‘I am a sickler’. Now say ‘I am a sickle cell warrior’. See the difference? Which one makes you feel powerful? Which one makes you feel better? Which one gives you the energy to get up out of bed today, in a body that is in pain or attacking you?
Choosing to live, and knowing that every day you are in a battleground where your own body is fighting against you, all the systemic and medical discrimination we face, and the daily struggle—what better term encapsulates all that?
Those with chronic illness are not solely their disease, it’s just a part of who they are.
My fellow warrior brothers and sisters, we have nothing to be ashamed or embarrassed about. Through no fault of our own, our genes dictated this hereditary malfunction. We didn’t choose this disease, but we are choosing to live our very best lives. Making that intentional choice—choosing to fight, that’s what makes you a sickle cell warrior.
Just as a soldier on the battlefield uses every weapon, ammo and arsenal in his battle kit, you must use all the tools at your disposal to fight for your life. Use your voice, your advocacy, your support system, your intelligence, your experiences, your research, medical, research, and scientific community … use everything you can use to gain the upper hand.
Moving away from the victim ‘pity-me’ mentality and choosing to be a victor, striving to fulfill your dreams like any other human being … despite it all…
As a sickle cell warrior, you have to gain the upper hand by taking the time to understand your body, the triggers of your crisis episodes, the daily management , taking your maintenance medications, following your medical plan, attending your appointments, understanding the condition, eating healthier, living with SCD, limiting negativity, balancing your energy, fighting racial and medical discrimination and attending to the mental/emotional aspect, all these factors; sickle cell is not your regular run of the mill disease… it’s a full time occupation that should be admired, never scorned.
Sickle cell warriors are the most amazing people one will ever meet, because despite the pain and all the issues listed above, we are grateful for life, in touch with our mortality, and we choose to live every day with intention. We are magical, unique persons because you can’t tell how much pain we are in by looking at our face.
I celebrate with all my sickle cell warriors today. Together, we have made another bold step forward, reclaimed our dignity and respect. We are running the race. Eradicate the S-word entirely from your vocabulary, so no one will ever feel that humiliating scourge again.
Let’s keep going, Warriors! See you on the front lines.
To hear more from Tosin, visit www.SickleCellWarriors.com and join the fight to end sickle cell disease