My wonderful friend and Founder of As We Are, Zoya Jiwa, asked me to do an interview and photo shoot for her foundation. For those who don’t know, As We Are is a style website for people living with health conditions. It combines peer mentorship and storytelling to support individuals experiencing symptoms and side effects of diseases, disabilities, and chronic pain. This is a space where comfort meets style, where functional fashion thrives, and where courage shines. My meeting with her really inspired me to get back into my blog, so here are a few of the interview questions I wanted to share with everyone.
1) Tell me a bit about yourself. What’s your story?
I am passionate about living life with a heart full of happiness and gratitude, appreciating the moments I have with my friends and family, and relentlessly chasing my dreams. I am a strong and kind-hearted person because of the experiences I had at a young age. I was diagnosed with systemic lupus erythematosus (SLE) when I was 13 years old – almost 12 years ago. It was a day I would never forget and an event that has changed me for the better. If you had asked me to take part in this interview and photo shoot six years back, I probably would have said no. But in the last few years, I have been focusing on growing as a person, finding new ways to inspire myself, and achieve internal peace and happiness. I am currently in my fourth year of my BA in Psychology at Kwantlen University. I am an aspiring Clinical Psychologist, and hope to be accepted into the clinical psychology graduate program at UVIC, UBC, or SFU. I work as a server at the beautiful restaurant, Nightingale, in Coal Harbour. I love my job because it brings both my passion for people and food together.
2) What advice would you give to others who are going through similar health challenges to yours? What has helped you or made you feel better emotionally along this journey?
As cheesy as it sounds, I truly believe that everything happens for a reason. I believe that I would not be dealt these cards if I were not able to handle them and overcome these obstacles. During my darkest periods, I had to constantly remind myself that there was more to all of my suffering. You get so trapped in your own world and forget to step back and take another perspective. I continuously remind myself that there will always be someone in a better or worse position than I am in and that I have a lot to be thankful for.
One of the greatest things I have learned in the last few years is to show yourself the same level of compassion, understanding, and forgiveness you show to friends, family, or strangers. This task sounds much simpler than it really is, because we naturally are our toughest critics. I was unhappy with my situation for a very long time being that I was constantly fighting against myself. For the majority of the last twelve years, I saw my lupus as a weakness or a handicap and I felt as though I had to work twice as hard to prove that I could do anything that any “normal” person was capable of. I pushed myself to the point of a mental breakdown. I was overworked, exhausted, and ignoring all the signs my body was telling me, just to get an ego-boost. I learned that allowing yourself to be vulnerable and appreciate those moments of weakness are the greatest signs of strength, humility, and wisdom.
3) Where do people stumble with their language or understanding about your health condition? What changes would you like to see?
I think there is a stigma when it comes to lupus, or any illness for that matter, that does not have a visible physical disability. People fail to understand that lupus is a real chronic disease that affects millions of lives and can lead to premature death. I have had coworkers or acquaintances tell me that lupus is not a real disease and there is a cure – unbeknownst to them, I had lupus. Just because I don’t wear the lupus label on my face or body does not undermine the severity of the disease. It does not discount the amount of time I have spent in hospitals, in doctors’ offices, getting blood drawn, doing x-rays and ultrasounds, receiving bad news, and the days I just wallow in bed. Not having a physical disability does not disregard all the challenges I have endured and sacrifices I have made with my lupus. I would like people to be more open-minded and to not take things just at face value. Just because I go to school and work everyday with a smile on my face, does not mean I am perfectly happy and that life comes easy for me.
4) In consideration of the challenges you have faced, what are you most proud of?
I am most proud of the progress and growth I have made in the last few years. I have developed my own understanding of strength and that is, that it’s okay, to not be okay. I don’t need to have it together all the time. I don’t need to prove to myself or anyone else that lupus is not my kryptonite. It is not an excuse nor is it something anyone should feel sorry about. Before when I was on the verge of a flare, I would just push myself harder and tell myself that it was a test of my character and perseverance. When in reality, it only ended up hurting me and setting my health back further. I have had to learn that the hard way, but now I can appreciate those instances when I can see past my ego and self-pride and just know and do what is right for me in that very moment.
5) Who or what are you inspired by?
I am most inspired by my friends and family and the love and support they show me. I remember the day I shared my first blog post about living with lupus. I was literally shaking as I uploaded my post. I felt sick to my stomach and was so nervous to see the response I would get from everyone, or even worst, if I got no response. I remember sitting there afterwards just crying and feeling this huge weight off my shoulders. I had finally let my walls down and was letting people in. I had hid everything to do with my lupus from everyone for ten years, and I got to a breaking point. I just couldn’t pretend that I had it all together anymore, when I was literally falling apart at the seams. The days following my initial post consisted of some of the highest and greatest moments of my life. The outpour of love, compassion, support, and encouragement I received from everyone was something I did not anticipate for. I cried even more tears than I thought possible, but for the first time, in a long time, they were tears of joy.
6) What are you grateful for in this moment?