Mourn With a Purpose: Channeling Sickle Cell Grief Into Advocacy

The loss of quality of life is a term that has been used in the context of a grieving person. The loss of quality of life for a grieving person is usually the result of death. But, it can also stem from the loss of a friendship, job, marriage, or any significant loss that causes a person to feel sadness, pain, and despair.

But what about my loss of quality of life? Is it a real, physical, and emotional charge that has the power to transform me?

Using grief for good

Though often overlooked, it was because of my significant loss that I began advocating. I know a few advocates who started advocating due to a loss of a loved one or a loss of their own quality of life.

I have read about and met several parents who have lost a child with sickle cell disease in all its various forms. Losing a child is something no one should have to experience, in my opinion. We usually hear about this on the news or social media; a military member, someone in police custody, or a football player having medical issues. They succumb to their conditions and their hemoglobin abnormalities played a role.

After the news reporters depart and everyone forgets about the headline, what is the next step for the family? Parents and siblings who have been impacted by this great loss have channeled their grief into advocacy. I advocate to aid another, speak for another, and try to make that knowledge gap smaller. Among other things, and I must remember to fuel my own grief of what I have lost.

Loss of quality of life

I was once asked by my pain management doctor what quality of life means to me. My answer would entail the things I could do in the past that I can no longer do because it would produce a good amount of pain. Nothing substantial developed from that office visit on that day. I didn’t receive a treatment plan and the doctor eventually left that facility. I'm looking to restart the entire process all over again, which would be my 6th time.

I also agonize over what I could do in the past compared to now. My condition got worse after I hit 35 years old. Previously, I was active playing adult amateur football and practicing my forms in Kung Fu martial arts. Now, I can’t run or jog without both of my knees swelling up, other health issues getting worse, or getting constantly fatigued.

Channeling sickle cell grief into advocacy

Someone’s loss should never be ignored. The loss of life and the loss of ability fuel many people, and they are channeling that energy to mourn with a purpose through sickle cell advocacy. Within the last 11 years, after talking to people and advocates, I have noticed that some of us are not in a position to hold out for the science to catch up, wait for the research to report its findings, or decide the winner of the debates.