How many times have you heard a person say, “I don’t care if someone is white, black, green, or polka-dotted, it’s who they are on the inside that counts.” Some people like to believe that skin color doesn’t matter and go so far as to claim that they don’t even see color. Unless you’re legally color-blind, I find such statements absurd. A wise woman recently said, “Saying you don’t see the color of someone’s skin is like saying you don’t see if someone is missing an arm.”

That wise woman’s name is LaVerne Caples. LaVerne is the only African-American person in our local scleroderma support group. African-Americans represent a disproportionately large percentage of the 300,000 scleroderma sufferers in our country. Yet, LaVerne has never met another black scleroderma patient face-to-face. At our last support group meeting, LaVerne wondered aloud why we don’t see many African-Americans at our annual walk, other fundraisers, or our support group meetings. Me and my big mouth piped in and said, “LaVerne, I think we should write an article about this for my blog! Maybe it can be a means to encourage other African-American scleroderma patients to join our community.” Visions of LaVerne and I creating a music video while singing Michael Jackson’s Black or White lyrics danced in my head as I enthusiastically began to explore all the exciting ways we could reach our objective.

Recently, LaVerne and I discussed what we hope to accomplish with this piece. We laughed a lot and made some off-color (pardon the pun) jokes. I now sit at my keyboard shrouded in self-doubt. Really Lisa? What on earth made you think that you- a white lady living in an affluent suburb-should write an article having anything to do with race? Are you insane? Racial issues in our country are at a boiling point…why would you willingly step into this minefield?

I don’t have the first clue what it’s like to have black skin in our country. I can’t ever know how the despicable acts of enslavement, bigotry, Jim Crow Laws, rapes, murders, hateful slurs, and segregation that are so deeply interwoven into the historical fabric of our country impact African-Americans. I will never know how the racial violence that continues to poison our society affects every aspect of black Americans’ lives. However, I can understand what it feels like to scan a room and feel discomfort because no one looks like you. I know what it’s like to be judged by my appearance and for people to formulate preconceived notions about me based on what they see. I understand why LaVerne wants to come to a scleroderma support group and talk to someone who looks like her.

I already hear critics saying, “That’s reverse racism. Why should a black lady feel that she can’t identify with a room full of white people? ” It’s not that simple. Scleroderma is an autoimmune disease that impacts patients differently. In LaVerne’s case, her skin’s texture, color, and elasticity are being altered. I suffer from similar symptoms, but, due to the varied pigmentation levels in our skin, they don’t manifest in the same way. In our case, the color of our skin truly matters in the most literal sense.

“Are you saying you and  LaVerne have nothing in common and can’t support one another, so you need to find her a black scleroderma patient with whom she can relate?,” asks the imaginary critic who I’m conversing with in my head right now.

No, that’s not at all what I’m saying, but consider this point. Have you ever had a terrible experience that was made bearable by connecting with someone else who had gone through something similar? Perhaps you endured a painful divorce? You still leaned on your married friends for support, but it wasn’t quite the same as the understanding you received from your divorced friends. It is human nature to seek comfort from those who have “been there, done that.”

LaVerne and I hypothesized why she’s the only African-American person active in our local scleroderma community, even though we know that there are other black-skinned scleroderma patients in our area. When LaVerne explains her scleroderma to other African-Americans, she typically hears that they already know about the disease because they have a friend or family member with it. Where then, are all these patients?

Is it a socio-economic issue? Scleroderma can take a devastating toll on one’s finances. It may be difficult for a person who is struggling to pay for their medical treatment to meet a fellow patient who is flying all over the country and being seen by the best doctors. Is it a cultural issue? Some cultures have the mentality that you don’t “air your dirty laundry in public.” Those who ask for help and support are perceived as weak. Is it the notion that if you don’t talk about something, it will go away?

The truth is, there are countless barriers that keep people in their proverbial silos. LaVerne and I aren’t going to change that. I know LaVerne will stay a part of our scleroderma community even if she remains the only black face in the crowd. She connects with her fellow scleroderma patients and derives comfort from them, just as they do from her. That said, LaVerne wants to extend an invitation to those suffering from scleroderma to step outside their silo. You can email LaVerne directly at: comfortableinmyblackskin@gmail.com to learn more about the benefits to  being part of a supportive community. If you live in Chicago, please consider attending the Scleroderma Foundation’s Patient Education Day on Saturday, October 10. This is a free event and there will be a session on African-Americans and Scleroderma.

Disclaimers:

• I referred to LaVerne as my friend in the title of this article. To be honest, LaVerne and I aren’t really friends. Yet. We only see each other at scleroderma events, but I hope our connection will blossom into a friendship.
• In the third paragraph, I referred to myself as “a white lady living in an affluent suburb.” Technically, that’s not quite accurate either. I am a white polka-dotted lady who never thought she would meet another face that looked like hers. Being part of the scleroderma community has given me the gift of seeing faces that mirror my own. I hope LaVerne can experience that same profound gift.