I was living a carefree life until a small, white patch appeared on my upper lip in 2015. Even though I was diagnosed with vitiligo a few years before, my first facial patch brought me worries, social anxiety, and low self-esteem. Right after this, de-pigmentation on different parts of my body went massive.
Though my family faced this new challenge bravely, I found it particularly difficult to accept and deal with it emotionally. Initially, the hardest part to deal with was meeting my relatives and old friends. It was also hard to believe that I was never bothered about my appearance once.
After trying hard (though I couldn’t do anything about it) and giving up the medication, I had the good fortune of getting past self-pity. One fine day, I decided to use vitiligo as my strength (not my weakness) and raise awareness about a rather socially stigmatized skin disorder. My discipline and dedication to make ‘Unite For Vitiligo’ a success made a huge difference. I started socializing again and talking openly about vitiligo.
Seeing myself going through the highs and lows of vitiligo made me learn a great deal about life and true empathy. Yes, vitiligo is a blessing in disguise. If you pay attention to each point closely, you may also be able to learn something (if not similar) from this enigmatic immunity disorder.
1. Learning helps.
It’s easy to dismiss or ignore information that you don’t want to hear. To detect the early signs of vitiligo, learn as much as you can, even if you don’t want to learn about vitiligo at all.
Having a curious mind, I gravitated towards available information on vitiligo, following the diagnosis. I wanted to know as much as possible. This has helped me communicate better with my doctor. Knowing more about the disorder can also help you:
- Expand your breadth of knowledge and experience.
- Develop an understanding of what to expect and how to prepare yourself for it.
- Prepare notes about resources, doctors, best practices and best stress management techniques.
- Gain a sense of empowerment and control.
- Improve your coping skills and sense of adjustment.
2. Be in the moment.
I was put on a vitiligo medication that included an after side effect of essential tremors. I needed to be watchful until getting adjusted to the side effects. At this lowest point, I realized that there are rather serious health problems (such as essential tremors) than vitiligo. The skin disorder may have made me hate my face at one point of time. But, at least it is harmless. As I worked through my rather small concerns, I began to notice a reduced level of distress and discomfort.
After a brief retirement from recreational activities, I started pursuing my hobbies again. This hiatus made me learn to be present in the moment and celebrate smallest joys of life.
3. Dispel myths about vitiligo.
Even though Winnie Harlow and Jon Hamm have publicly spoken about their experiences with vitiligo; it is still known as that mysterious, ‘Michael Jackson disease’. By talking openly about vitiligo, you can educate people about a condition that too few know about.
Is answering all of those questions easy? No, it’s not. But remember, for every person you educate about vitiligo, there is one less person who might stare at the next person with the skin disorder. By talking about it, you are increasing awareness for the vitiligo community as a whole.
4. Look on the sunny side of life.
It is easy get depressed and take a negative view of life after being diagnosed with vitiligo. I, however, always focus on finding the solutions to problems instead of lamenting having problems. Everyone in their lives have issues, but remaining positive makes a huge impact to mental well being. Rather than thinking about how the grass might be greener on the other side of the fence, grow your own garden and make it flourish.
5. Put your skills to good use.
I was already a successful content marketing professional when my patches starting growing aggressively. I remained active in my professional life despite my worsening self-esteem. Once I had enough money to fund Unite for Vitiligo independently, I decided to make ‘others in the same boat’ feel less alone. I leveraged my storytelling gifts to make ‘Unite for Vitiligo’ globally accessible.
I am sure, depending on your profession, free time and skills, you too can make this world less frightening for those struggling with vitiligo. All it takes is contributing in your own capacity, no matter how small. If you wish to contribute to ‘Unite For Vitiligo’, drop us an email at [email protected]
6. Understand how others feel.
Dealing with vitiligo has been painful initially, but it’s also born some good in me. I’ve watched myself develop sensitivity and compassion for people with skin disorders and disabilities. Being understanding and knowing the limitations of others, listening carefully and understanding other’s perspectives have become my natural instincts.
Now, when people come to me and confess that they feel self-conscious about some aspect of their body, their weight, or their hair, I understand how it feels. This true empathy makes me cheer them up. I feel compelled to remind them that our flaws are always in our own heads and it’s best to to be okay with them rather than dwell on them.
Also, I understand the importance of healthy living more than before. I appreciate what others do, say ‘thank you’ a lot and aspire to make a difference like other strong vitiligo fighters.
7. Don’t accept defeat.
Even though vitiligo has no cure, I was determined to fight it any way I could. I was not prepared to give up on my quality of life, and through determination and focus to tame this disorder, the progression of my vitiligo slowed down. Unless a cure is found, I will have vitiligo for the rest of my life. However, my mental health and quality of life is still very much in my hands.