Whether you have vitiligo, know someone who has it, or are a skin-positive advocate, there are multiple ways you can positively impact the vitiligo community. Some of the most impactful ways I’ve discovered for having a positive impact include educating others, joining a support group, telling your story, and collaborating with local medical professionals.
Educate Others: learn about the diagnosis from a medical professional, personal perspective or both
Being diagnosed with vitiligo or any medical condition can be scary and overwhelming. That is why learning about your condition is so important. Often, when our doctors diagnose us, details can sometimes be missed and we leave their office with a mixture of emotions. Depending on the person this can inflate any concerns they had before seeing their doctors, meaning this can sometimes lead to stress and anxiety. I know when I was first diagnosed, I was incredibly overwhelmed. Thoughts of distress were flooding my mind and even more so once I started researching the condition myself.
So why am I telling you to research you ask? I’ll tell you why. It’s critically important that you arm yourself with the correct information about your diagnosis. What does it mean to have vitiligo? Is it life-threatening? How do I function in the sun? Is it curable? What are my treatment options? The list can go on and while Google search can be overwhelming because of all the information that is available, there are many ways to help balance this while arming yourself with the information you need. One of the best ways to do this is by learning about vitiligo from those who share your condition.
Join a Support Group: build community by 1) joining a local support group, 2) following those who raise awareness on social media, and/or 3) reaching out to others who share your condition:
I cannot stress enough the importance of this step. No Google search, no doctor, nor any Harvard Scholar will be able to teach you about your condition the way others who share it can; unless of course, they also have vitiligo. Humans are designed to share life experiences with others, yet we often choose to compartmentalize our emotions and thoughts, which in turn amplifies that inner struggle of feeling alone. That is why building a community or being part of one is so important.
Support groups and social media platforms are a great way to gain instant access to the vitiligo community. When I was first diagnosed, I experienced a series of ups and downs and I didn’t understand why this was happening to me. I was concerned and embarrassed. But one thing I did, that was truly groundbreaking for me, was to redirect my emotions. Rather than spiral into a web of worry, I decided to learn about my fellow vitiligo beauties. I learned so much about the people who share my condition, but I also confirmed that not everything I read on Google (claimed to be medical facts) to be true.
When you join a support group and/or start interacting with others on social media you learn a lot. They teach you about their experiences and they help cancel out vitiligo myths. They also help you discover what’s going on with your body, and they help you to see the beauty in your skin. Being a part of this community also enables you to push your boundaries because everyone in the group has the same goal. I remember having a conversation with my friend about this during my early days of diagnosis. I told her the people in the community are the sweetest people you’ve ever met, and she replied, “It’s because they understand”. For these reasons and more, I believe this step plays a critical role in our journey toward acceptance. For me, understanding how vitiligo medically affects my body, but also how others in the community have dealt with it/learned to grow despite it, has enabled me to move forward with this new stage of my life and thrive. However, I recognise this method isn’t for everyone. Not everyone feels comfortable discussing how they feel and what they are going through and that is perfectly fine.
Tell Your Story: telling your story will inspire others to 1) tell their story, 2) encourage them to focus on their own self acceptance, 3) propel awareness further:
Telling your story can be very freeing and healing. You never truly know what someone is going through until you have gone through it yourself and often, we feel alone, until we know we are not. That is why I believe telling your story is so important. When you tell your story, you are raising awareness. Raising awareness is more than just telling your story to the people who share your condition. Raising awareness can help others understand what their friends, family, and people in the world struggle with. It gives people a bird’s eye view that expands beyond what a general practitioner or a simple Google search may teach you, and while everyone’s experience is unique, we also share many similarities because we come from the same tribe. We are the 1% and we are beautiful.
Telling your story can also help propel awareness further. To this day, there are still myths and taboos attached to vitiligo. Raising awareness helps stop this pattern. It helps us to understand our bodies, our minds, and the condition(s) we face so we can tackle it head-on and advocate for ourselves. This is important because once you know what it is (whatever that thing is that is affecting your life), you can process it and create a situation to heal. Raising awareness, therefore, fosters an environment for healing and discovery. But of course, some people may prefer to remain private about their diagnosis until they have had more time to process all the details. They may choose to be silent until they have reached a place where they can be more open, and we should respect that.
Collaborate with local medical professionals: find medical professionals in your area that are right for you, your friends, or loved ones:
While I love and respect medical professionals, I have also had my fair share of bad experiences including misdiagnosis and being strongly advised to take part in treatment trails. I have also encountered many doctors who did not take the time to teach me about my condition. They had a certain way of treating what they believed was the best route, and they disregarded my concerns and treated me differently when I wanted to approach my health holistically. As someone who has vitiligo, but also thyroid disease, endometriosis, and other inflammatory conditions, my experience has taught me that finding the right doctor is not only an extremely important step, but it can also be a difficult task to achieve. However, there is hope. There are good doctors out there and we can leverage the relationships we have made in the communities we have joined for recommendations for doctors and specialists who will address our needs and work with us despite the treatment route we choose (traditional, holistic, or no treatment at all). Vitiligo is not a life-threatening condition, so choosing to treat your spots and patches is purely an individual’s choice to make. I choose to not treat mine, but I also respect a person’s right to choose.
This blog was inspired by my personal journey navigating through being diagnosed with vitiligo and endometriosis. I believe these four methods can be used both as a navigational tool for the newly diagnosed but can also help those who do not share this condition to support the ones in their life who do. Whether you apply these steps one by one or all together, you will have a positive impact that helps the next generation of people in our tribe, as well as those who know, love, and support us.