Sickle Cell Disease is the most common genetic disorder in the world. It’s with you from birth, and in most cases there is no cure.

It’s defined by the presence of red blood cells that are curved like a sickle instead of being circular. These “sickled” cells tend to get stuck in blood vessels and can block bloodflow to any part of the body. This triggers excruciating pain crises, causing a host of medical complications ranging from stroke to organ failure and beyond.

Unfortunately, Sickle Cell awareness is incredibly low, and the amount of effort being put into finding new treatments is insufficient. Furthermore, Sickle Cell Warriors – people who have Sickle Cell Disease – face systemic abuses at every turn, including stigmatization within the medical community.

What can be done to address these problems? I have no direct experience of Sickle Cell, which is why I have invited artist, activist, advocate, and Sickle Cell Warrior KAMMs to answer a few questions.

 

What are some failings of our medical system when it comes to the treatment of Sickle Cell (and chronic illness in general)?

Some of the main failures include lack of awareness, lack of education, and insufficient training. Sickle Cell is far too prevalent for medical professionals to know as little as they do.

I once had an ER doctor ask my mom and me what Sickle Cell is. Eventually he returned to the room with a huge book and proceeded to look up the illness while we waited in agony—me in physical pain, my mom dealing with her own emotional torment. That’s unacceptable. It’s also not uncommon.

If you have no idea what it is, how in the world can you properly and effectively treat someone with this illness? It stands to reason that you can’t, not really–not without trusting and listening to the patient, which most medical professionals prove unwilling to do, when it comes to Sickle Cell.

Insurance, affordability, and access are other major pot holes on the road to good health care. Up until recently it was impossible for those with Sickle Cell Disease to obtain life insurance. I was blessed to grow up with great medical coverage thanks to my parents—that part of my story, unfortunately, is uncommon. Knowing my own medical debt, I can only imagine what other folks’ debt looks like.

What are the stigmas that affect the Sickle Cell community and how can they be undone?

The main one is that we’re all drug-seeking, addicts. This one is overwhelmingly untrue. However, certain things like lack of treatment options make this one difficult to disprove.

For instance, scientists and doctors say pain from Sickle Cell is worse than pain from childbirth. The only treatment option for moderate to severe acute pain crises comes in the form of heavy narcotics, often at doses higher than most folks are used to seeing, administering, receiving, or even hearing about.

Then, Insert here all of the stigmas attached to the Black community here in the states. Anti-Blackness is so real, so prevalent, and so pervasive that the stigmas attached to the dominant culture’s version of Blackness are inextricably linked to Sickle Cell Disease–so much so that even those Warriors who aren’t Black often feel the ripple effects of anti-Black racism.

How can these stigmas be undone? Dismantling the system that is racism, including anti-Black racism. That is the job of those who hold onto these stigmas—that burden is not ours.

More Radical Reads: When Healthy Isn’t An Option: How I Learned To Love My Chronically Ill Body

What else can you tell us about how anti-Blackness plays into the treatment of Sickle Cell?

Assuming we understand anti-Blackness to mean anti-Black racism and racism to mean the system that privileges, gives advantages and power to one group over another based on race, we can assume the list of ways in which it plays into the treatment of Sickle Cell is too long to list here.

I’ll say this: many Sickle Cell Warriors report high anxiety surrounding trips to the ER because of previous emergency room experiences. I’m talking about textbook PTSD if we’re being real. Sometimes the physical pain is easier to deal with than the microaggressions.

This is something that comes up a lot when we’re at conferences or exchanging stories with each other: many Sickle Cell Warriors say they spend a great deal of time worried about what they’re going to wear and how they’re going to look or present when going to the ER for emergent treatment, myself included. Respectability politics, which ties a person’s behavior or presentation to their worth or how they’re treated, are at play heavy here thanks to anti-Blackness.

I was at a conference recently when the discussion of attitude and communication during painful crises came up. Many Warriors feel an immense burden to be “on their best behavior” or to present their best selves, be pleasant and friendly while in excruciating pain.

There was a back and forth about why Warriors need to strive to be friendly and have pleasant attitudes and even the common suggestion that Warriors go back and visit these medical professionals when we’re well so they can see us as “regular people and not just patients.” That’s ludicrous. It’s also insulting. I’m a person whether you choose to acknowledge my humanity or not and I’m not going to go out of my way to prove it to you.

This is why the fight to remove the label “Black disease” from Sickle Cell is such a problem for me. When I hear folks who are super adamant about letting others know, “Sickle Cell is not a Black disease,” I ask why this particular message is important to them. Unfortunately, “because we want everyone to be tested early” or something to that effect, is not usually an answer. Their answer usually has something to do with the desire to distance the illness from Blackness. As if to say, “please care, take us seriously, it affects white people too…sometimes…every now and then.”

Poor treatment, mistreatment, stereotypes, lack of funding, lack of knowledge, clinics closing, resources being pulled–all of this is tied to race, and by proxy, class in america. When we don’t talk about that, when we try to erase the color – when people say, “technically it’s not a Black disorder,” they are attempting to mask the anti-Blackness that’s at the heart of all these problems. It’s like people claiming to be “colorblind” and not see race. That’s cute, but that’s not how it works.

Here in the states, Sickle Cell Disease overwhelmingly and disproportionately affects Black folks–1 in 500 hundred of us. That fact is at the core of why this illness is in the state it’s in. We can’t have conversations about Sickle Cell in america without talking about race.

In what ways has Sickle Cell affected your own search for radical self-love?

When someone first asked how SCD affected my mental and emotional health I was confused. It was like he asked how being Black affected my mental health. Both are valid questions and still I was stumped. “Uh, I mean, uhm it doesn’t!” I said. He was a bit shocked by the answer. In retrospect I can understand why.

Sickle Cell absolutely affects my mental and emotional health as well as my relationship to my physical body and in turn my self-esteem, self-worth, self-confidence–in essence it has shaped my sense of self. Now, it seems silly to have ever thought otherwise. This is why holistic health and caring about the entire self, not just pieces, is so vital.

Some of us grow up hiding our Sickle Cell, living double lives until we’re forced or willingly step out of the proverbial chronic illness closet, and then through the extra security gate that is Sickle Cell. I totally get why some of us choose that option, still, for me, it’s sometimes difficult to relate to. As a kid, I didn’t realize that this thing I was proud of was something I was supposed to feel bad about. I didn’t know that until people started questioning my self-assuredness.

This is why it bothers me when we sit in awe of children’s self-love or self-confidence or question it–we’re sending the message that it’s misapplied or that there’s something about them that doesn’t warrant that level of self-love or confidence. It was adults’ constant awe of my normal that made me start to question my own sense of self.

Before that it was like, you have this thing that makes you different, and the fact that you’re who you are even with this thing that’s trying to kill you every day is more than kind of a miracle–you’re like a superhero with your own personal villain to defeat daily (and I don’t just mean the actual illness) and every day that you’re alive, you win. How could I be ashamed of this? Call it naïveté, I just never realized until I was older that Sickle Cell was supposed to be holding me back. I think that has everything to do with MOMMs and how she approached everything from day one.

What do you think radical self-love could do for your community?

At the beginning of my sophomore year of college I had emergency surgery to have my gallbladder removed, like many Sickle Cell Warriors. The surgery left me with four scars across my abdomen that turned into keloids. They’re huge, they’re painful, they suck, and I love them. They’re my battle wounds.

I didn’t always. I had to start being intentional about loving this new part of my body. I kept them uncovered whenever possible, forced myself to see them more often. I didn’t hide them from other people, which forced me to explain their origins every time someone was bold enough to ask. This lead to me being nearly naked a lot more often, which forced me to let go a lot of socially-imposed hangups I was holding onto about my own body. Now, everyone who knows me knows I rarely have on clothes at home.

When I hear us Warriors exchange stories and share experiences I often hear so much apologizing in the subtext of our words and it chafes my spirit. That’s what hiding my scars was, apologizing for them. That’s what hiding our identities as Warriors often is: apologizing for being different, “not normal,” sick, not easy to understand, or difficult to deal with while in pain.

We need radical self-love in place of our apologies. My unapologeticness, my boldness, my fight for better comes from radical-self love and the love I have for other people. It comes from loving myself and my people enough to defend our humanity and demand what we deserve, even when I’m scared, even when I’m tired, even when it hurts.

I think if we all experienced truly radical self-love within our Sickle Cell communities it would collectively change the way we approached our fight. And our strategy could certainly use some help right now. I see a few folks and a few groups out there headed in this direction and I couldn’t be more thrilled about that.

More Radical Reads: “How Do You Love Your Body On Bad Days?:” 6 Lessons to Surviving Illness & Resurfacing Self Love

What can our readers do to fight Sickle Cell and bring light to these issues?

Educate themselves on the illness as well as race and systematic oppression. Simply understanding these things better and how they fit together in the larger picture will reveal a bevy of ways you can personally become an accomplice alongside Sickle Cell Warriors in the fight against Sickle Cell.

From donating to a trusted organization to asking your friends and family members if they’ve ever heard of it and starting a conversation about why this issue is important to you. That’s always one of the best first steps: start with your family and friends, people who know you and care about things you care about.

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In order to continue producing high quality content and expanding the message of radical, unapologetic self-love, we need to build a sustainable organization. To meet these efforts, we’re thrilled to share the launch of our #NoBodiesInvisible subscription service. This service will provide our community with access to additional content and rewards for your monthly investment in furthering our radical self-love work.

[Feature Image: Painting of three images in a collage. The first is of red cells in the background as a dark ski person holds a child. The second of a row face crying ad last a had reaching upwards.Source: Hertz Nazaire,sicklecellvotes.com  ]