Archita Bhalotia, 27 from Mumbai has had Albinism since birth. She shares how she navigated difficult phases during her school life, dealing with vision impairment and learning to become confident and regain self-esteem.
Please tell us a bit about your condition
I am a person with Albinism which means the absence of melanin (the chemical responsible for the producing skin color). It also entails weak vision. Albinism is a lifelong condition.
What were the early symptoms? What made you go see a doctor?
Symptoms were present at birth itself. White color of skin and hair along with low vision.
Please describe your experience of managing your condition.
It has been an ongoing process since I was born. I did not understand the condition immediately but as I grew older, I questioned it and tried to gather information from my family. They helped me understand why I look the way I do. This was still difficult to accept initially. Gradually I managed to remind myself that it’s not a disease, it’s a condition. It was difficult in school because people were unaware of it and ridiculed me often. However, there were people who also continued to associate with me. It got better during high school where I was able to be more open with my thoughts and experiences. As I became an adult, it became simpler to manage because I gained more confidence in my achievements. I also realized that I can’t control what others think or say. As long as I am able to function and keep accomplishing my goals, I should be alright. Fortunately, I have friends and family who have been supportive unconditionally. This has really helped me keep my head high and strong. In times of grief about my condition, I try to self-affirm and remain rational. It is still an ongoing struggle but I am also a stronger person and better at identifying emotions about it better and working on them.
Do you have a family history of your condition?
Yes. My father is diagnosed with partial albinism and my mother is also a carrier of the gene.
Have you had any related complications from your primary condition?
None, other than minimal vision concerns.
Is there any treatment?
There are no medical treatments available. I am not on any medication, never have been. I have tried multiple spectacles in the past for the sunlight and distance but they have rarely been helpful. Now I do not use any equipment.
Did you have to travel outside your city for your medical treatment or consult?
Initially, as a child I have travelled around the world to visit doctors for my vision related concerns. Now, none.
Have you learnt anything in managing in your condition that you wish you knew before?
Yes. I have learnt to remain patient and assertive. It has made me more tolerant of insensitivity towards different people. I have learnt to keep a rational and empathetic outlook towards those who seize to understand individual differences. I have also managed to not blame anybody for my condition. I wish I knew how to be all of the above as a child as it would have made my journey simpler. I have also learned different ways of equipping myself during solo travels, or other independent work.
What changes have you made to your lifestyle because of your condition?
I avoid going out in the sun/heat as it causes intense sun burns and eyesight issues. I also use larger font sizes in most reading material I use like phones, laptops, tablets, etc. I have used reasonable accommodations at work and graduate school for classes and examinations.
Have you tried complementary medicine or therapies, like homeopathy or yoga? If yes, did it help?
I do practice yoga for physical and mental health purposes, unrelated to my condition.
How did you mentally/emotionally cope with your condition?
I had a lot of family support during this time which has been the most effective for me. I have also sought therapeutic assistance from time to time.
Did you see a counselor for support?
Yes. In high school I started seeing a counselor. I continued the same during graduate school and still see one for healthier well-being.
How has your family supported you? Who has been your biggest support/companion through it all?
My family has never left my side in any endeavor I embarked upon. My parents and older sister have been my pillars of strength through thick and thin, unconditionally. If it weren’t for their constant support and love, I would be miserable. They have allowed me to go out there and do anything I want. They have not stopped me from going places, finding my way around, accumulating my experiences, studying as much as I wanted, helping me navigate through roads, reading out menus for me which were otherwise too tiny for me to read, and so many things which I can’t count anymore and can’t be more grateful for.
How did your friends treat you? Were you isolated? Did you share your experiences with them?
As a child, I didn’t have many friends. I was shy and lacked confidence to go interact with people in school or otherwise. I was isolated for parts of childhood and adolescence but as I grew up, I was able to make more friends. Most of them were understanding and helpful. I think young adults and adults were more sensitive as friends and peers than children. In graduate school, I was able to be myself around people. Most of my friends now understand my condition and offer their kindness and sensitivity just like my family does. I’m very grateful.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
Most of my challenges were/are related to my vision and how people see me. It has always been challenging to prove myself as a ‘normal’ human being who is capable of doing everything anybody else can. There is a constant struggle to help people understand that I don’t have a disease or a disorder and my functioning is nearly perfect. I can’t stay out in the heat for too long, can’t read fine and distant print, and I guess that’s about it. Social interactions are also sometimes odd because again, people have a lot of questions and I fortunately have a lot of patience.
I would say that as difficult as it is sometimes for us, stay strong and don’t judge people too soon. Sure, they may be insensitive and you may have your own set of concerns, but if you can believe in yourself and have faith in your achievements, you’ll be fine. I would suggest that ask for help as often as you want because it’s always available. Don’t hold back from asking someone for their assistance. Try doing everything you can yourself. It really adds a lot of confidence and self-respect. Don’t doubt yourself or your ability to achieve. Seek emotional support as much as you need.
How has your diagnosis changed your life perspectives and ambitions?
My ambitions have remained the same ever since I placed my finger on what I wanted to do in life. I have found myself to become more cautiously optimistic about life and people. I’ve realized that no matter how hard I try, I can’t change what people think and that’s okay. I affirm myself often and keep myself rationally positive. I believe that life isn’t just difficult for me because of my condition. There are others who also go through plenty of troubles, without any condition. I am more empathetic, sensitive and tolerant because I know how it feels when someone else offers me that kind of support. Perspectives keep changing as we evolve and I have faith that I will continue to grow and reach for the seventh sky.
What keeps you awake at night?
Sometimes I wonder where I will end up in the future. I hope to move away from the country and start a fresh in a foreign land where I may be more accepted and welcome. I also think about who I might end up with, who will be able to accept my quirks and read the menus for me. I have often imagined myself being ‘brown’ with 20-20 vision and I guess I wouldn’t be satisfied with that. I think I have stayed up feeling grateful for being able to make my peace with myself, to a certain extent and not giving up.
