Andre Joachim Jr. was 18 years old when he was diagnosed with vitiligo. This was the time when social media was not around. The only other person he knew who had vitiligo beside him was Michael Jackson. It just got tougher when Andre factored in dating. Young women would ask him what type of disease he had got, assuming his vitiligo to be contagious.
There was a lot of ignorance and lack of awareness about vitiligo. Andre was not able to get a job at McDonald’s because the manager thought he would scare customers away. This only forced him to lie and say he was burned or it was a birthmark.
After a while, Andre started growing a tough outward exterior to deal with the jokes, ridicule, or some of the offhanding comments. However, it took him a long time to embrace his vitiligo. Now all he can say is that he loves his continually evolving patterns. He has participated in some modeling campaigns such as Botchlife and The Skin I’m in Exhibit. In addition to being in a music video by Half Mile Home (in their song I Won’t Judge), he has created a brand clothing Viti-Wear Viti-Nation, exclusively for vitiligans. The following are excerpts from an interview with Andre Joachim Jr.
Was it more difficult for you as a teen? How did you come to terms with it?
According to the Kubler Ross model, which is five stages of grief, I think the newer modified version of 7 stages, which is more accurate of what I went through in my journey.
I was first in Shock and Denial. I thought if I ignored it, it would go away. I would avoid it and pray that it went away.
Right after this, the stage of Pain and Guilt hit me. When the shock wore off, I was blaming myself for something I did and thinking that I was probably cursed.
Once I entered stage 3, Anger and bargaining, I was angry at God for cursing me when I knew people who had done far worse. I would curse God and inwardly want to die; then I would later try and repair my relationship with God by asking him to cure my vitiligo and then tell him the ways I would serve him or make things right.
The fourth stage was the Depression. This is where I would socially isolate myself because of the mental anguish of looking at my skin change and the lack of support I had. I masked my pain with marijuana or alcohol to numb myself. I would battle with depression for a long time.
With the fifth stage, Upward Turn, I started learning to live with it, and the more I became one color depigmented, it was a little easier to deal with stares and adverse reactions.
The sixth stage was Reconstruction. With the help of others, I started accepting myself and learned to begin start liking myself. I lost 75 % of my skin color, and the reactions were a lot less intense.
Finally, the stage of Acceptance and hope came along. I started seeing myself more positively and became more and more confident. After a while, I loved my new skin and saw that life was enjoyable and worth living.
All that came crashing back down when I was incapacitated with lupus. I was so sick from lupus I became bedridden and was forced to take a large number of steroids. It brought back my pigment, but it also brought hyperpigmentation. So the skin tone I grew accustomed to went away, and I was now staring within a few weeks of another person I did not recognize which brought me back to my initial stages of grief and loss. I lost that person that I now accepted. Now was this blotchy 3 and four toned guy that I had no clue where he came from and had started the process of acceptance again. This time, the stages seem long because my color had continuously fluctuated after those stages.
Did you experience bullying? How did you handle it?
I think bullying comes in many forms. There is the harmless bullying where it is meant for you to take it as a joke. Then there are the outright discriminatory practices of jobs or establishments, where some people will not hire you or take money out of your hands because they fear to catch what you have. Then some parents will not even do anything to either explain to their kids how their reactions could cause hurtful emotions or trauma to someone inadvertently, not to mention the parents whose response were worse than their children. Then, there were people you would be in a relationship with and the first thing they can think to do when they were angry with you, talks about your skin color and call you names or tell you that you would never get anyone else because of the way you look. Then there is the playful banter of family, in which you mask or laugh and act like it doesn’t hurt. So yes I have experienced many types of bullying.
What are some things that people commonly get wrong about your vitiligo?
I cannot believe that in this day and age is that some people think that I could pass it to them, like a cold or virus. Then there are the people who think you are burned in a fire or chemicals. Some people tell you to get over it, which I think they are worse than the people who outwardly discriminate. No one has the right to tell someone how they should process what is happening to them or their body especially when their immune system is compromised or when their body is acting out of sync.
What movies, books, poems, stories, or other works of art have inspired you and encouraged you through difficult times?
When I think of comic book heroes that inspire me, I think of Rorschach from Watchmen. His masks change, and so does my skin. I think that is cool in itself.
Movies, I think of Wonder. That kid overcame a lot and grew to accept himself and developed a powerful support system which is something everyone with vitiligo needs to do.
Songs, I would say Titanium by David Guetta is inspiring. “Shoot me down… but I won’t fall… I am titanium”. We all need to have titanium skin and never submit to societal constructs that says that we are not beautiful or we need to conform to someone’s idea of beauty.
https://www.instagram.com/p/BlR1-TkgTMt/
How do you feel about having vitiligo now? Do you wish you didn’t have it?
To be honest, I love my vitiligo. If there were a cure tomorrow, I would not take it. I love being different and I have found my difference has fostered connection. There are a lot of people in society that see themselves as distinct. Our different is just outwardly. I connect with people who are self-conscience about scars, marks, or other issues. The connection is powerful! I think I love being unique and I often tell people that when I walk into a place, I know for a fact I am the most handsome spotted gentleman in the building. I would not be the person I am now without it, and I love that person.
Even as I do love my spotted self, I want a cure for others. Not everyone feels like me about their vitiligo so I feel it would be selfish for me to say that I don’t desire a treatment for the rest of my community. I want a cure for those who struggle with having vitiligo and look Characteristically Unique. As for me, I will continue to be ‘Spotacular’ or as Archie Culture says Viti-Licious.
From what we have seen on Instagram, people generally own it and are proud of it, and commonly testify to turning down treatments or creams to change their skin. Do you find this relatable in your case?
I try to serve as role model and speak to self-acceptance. That is the only 100% cure. I have learned through my work as a therapist that the only one cure for emotional wellness is self-acceptance. What you think is a weakness, or a flaw can also be visualized as strength. My difference not only makes me unique but also sets me apart from looking exactly like anyone else. I am privileged to be part of my 1% community and no matter what I am going to wear my vitiligo with pride. It’s my accessory when I go out, and I accessorize my accessories to fit in with my vitiligo so that people will know, I’m rocking my vitiligo with pride.
What are you working on currently?
I am a Youth and Family Therapist and is currently working on my Ph.D. in Counselor Education & Supervision. I hope to focus scholarly writings about the psychological, social, and emotional impact of vitiligo. I have also advanced training that I specifically have acquired to help people with chronic illnesses and those who have experienced adverse emotional experiences.
I am also in the process of doing some scholarly research that looks at suicidality with the vitiligo community. I am hoping to partner with Live Out Loud Charity LOLC and Project Seth, which are two suicide prevention non-profit organizations.
Then earlier this year I started a clothing brand Called Viti-Wear Viti-Nation, which is meant to empower people in our community and the people that support our community. I feel the clothing inspires conversation. It is the gateway to spread awareness and create an easy way to discuss Vitiligo. I have heard many people say that it has made talking about it easier. I am also set to work with a director from New York on an upcoming project. So basically, I am staying busy with work, school, and advocacy.
What do you want to achieve from your vitiligo advocacy work?
My goal is to create support to help others with scholarships, to pay for individuals with vitiligo to travel to World Vitiligo Day (WVD) conference wherever it is being held. I want everyone with vitiligo to experience what it is like to be surrounded by other people who have vitiligo. The conference is growing every year and as it grows, so does the energy among the people that attend. It is so incredibly powerful that it changed my life and continued to change my life every year and I want everyone in our community to experience this once.
I want the world to know about vitiligo so there is not one person who will experience distraught and discrimination. I am still growing, learning, and understanding about vitiligo. For other members of my vitiligo family, I am here for you, as a friend, brother, and a clinician. I wholeheartedly believe that with our collective voice we can achieve great things.
At present, Andre lives in Illinois, but his roots extend to Trinidad & Tobago. Some of the things that he has done for the community reflect on his social media accounts. You can shop vitiligo awareness clothing from viti-wear-viti-nation.com
