THE BLOG
01/02/2014 05:24 pm ET Updated Mar 04, 2014

Zain's Secret

Toby Maudsley via Getty Images

I met Zain Verjee in September, 2000 and we quickly became sisters. She is undeniably talented, but like so many people who see her striking face, I first assumed that beauty was a tool for her easy deployment and that luck was certainly its byproduct. Shortly after we met, she invited me into her home and into one particular room, where she pulled out a box that was locked away and covered with layers of unsuspecting artifacts to conceal it. Any burglars would be able to find her most precious jewelry before they could find this box. She said to me with a fearful expression I'll never forget: "I want to show you something, but if you ever tell a soul, I will never speak to you again." I could not begin to guess what was in the box. She then pulled out photographs, each of disfigured limbs and patches of skin so distorted it was hard to make out what I was looking at. It took me a few moments to realize that this was her body.

As one of the few who knew her secret over the years, I stood by her countless times in dreaded social settings where she had to balance grace with firmness and education without revealing her condition. I watched the drink and food pushers who would give her a hard time if she wasn't consuming what they thought she should be consuming. I watched people quickly offer pat skin advice when they noticed a mark or a spot on her skin, convinced that their fade cream would do the trick. I watched many doctors dismiss, and often mock, the notion that healing is possible beyond pharmaceuticals alone. I watched her masterfully navigate clothing, gloves, nail polish, hair, stockings, food and relationships, all in an attempt to conceal the secret. In one way she succeeded: people had no idea. However, the same success in secrecy meant more cringe-worthy exchanges with people who thought they knew best. People could not imagine the backstory of Methotrexate, Enbrel, steroids, painful lasers and hospitalizations behind a single spot as they dispatched advice about a hand cream.

Many people are suffering privately for a myriad of reasons. A face will not necessarily reveal this. Perhaps because we so badly want a solution and we want the solution to be simple, neat, clean and turn-key, that is what we offer as a gesture of help. In doing so, we extinguish the complexity where truth often resides and diminish the plight of the person before us.

Zain's story reveals the duality of the visible and the invisible, of private suffering and public fortitude. A triumph won day by day through unremitting discipline and the conquest of fear.

Zain’s story can be found here.