Shakeila: “Embracing my life and the beauty of the world despite my eyesight" (Keratoconus)
Published Sep 27, 2023 • By Somya Pokharna
Shakeila, a traveler and adventurer at heart, has a profound perspective on life and an unwavering spirit. Through her blog, she vividly chronicles her transformative journey of living with Keratoconus (KC), a rare progressive eye disease, and how it has made her truly cherish the world's beauty and make the most of her time.
In this interview, Shakeila discusses her personal journey, including the challenges she has faced, her triumphant moments, and the invaluable lessons she has learned along the way. She shares her experiences, from receiving a diagnosis to the intricacies of her daily life with specialized contact lenses. She also provides insights into navigating the realms of dating and family life while managing her condition, and she even offers some of her expert makeup tips.
So, let's delve into Shakeila's inspiring story!
Hello, Shakeila! Thank you so much for agreeing to share your story with the Carenity audience.
First of all, could you tell us more about yourself?
It’s a pleasure to be sharing my story with Carenity. For the past couple of years, I have been through a lot with my eyes which has changed my life drastically and I’ve learned a lot throughout the years. I’m currently an accountant within the luxury hospitality industry. I enjoy traveling a lot, learning about different cultures, sightseeing; I find myself doing more sightseeing compared to when I was younger, it has a lot to do with knowing I have limited time with my Scleral Lenses to see the world, so I try to take in as much images as possible and tattoo them to my memory, so when I’m without my lenses I can think back to those moments and smile.
What is your condition, Keratoconus? What prompted you to seek a diagnosis?
Keratoconus (KC) is a progressive eye disease, in which the normally round, dome-shaped clear window of the eye (cornea) progressively thins, causing a cone-like bulge to develop. This eventually impairs the ability of the eye to focus properly, potentially causing poor vision. Although keratoconus has been studied for decades, it remains poorly understood. Unfortunately, the definitive cause of keratoconus is unknown. I was prompted to visit the doctor because when I was around 17 or so, I was having trouble seeing and I was quite eager to get my driver’s permit at the time to start learning how to drive. So, I went to the doctor who misdiagnosed me and told me I could have cataracts, which scared the living crap out of me. But then I went for a second opinion. When diagnosed correctly, the doctors on the island still couldn’t give me answers as to what to expect when having keratoconus.
What is your current treatment? Are you satisfied with it?
I’m currently in the advanced stage of keratoconus so there are no treatments I can go for. But I wear Scleral Lenses to see the world. Although I have a limited time to see (over-wearing of the lenses can put tension in the eyes, causing blood vessels to form because there’s not enough circulation of oxygen, and lead to infections), I’m still able to enjoy the little wonders that life has to offer.
You mentioned that you encountered quite a few difficulties with healthcare professionals, including receiving a misdiagnosis. Can you share more about that experience?
I’m from the Caribbean, and based on my personal experience, a lot of doctors didn’t know of Keratoconus. They knew the name, the signs to look for, and how to treat the mildest patient, but they didn’t know. I’m unsure if it has to do with it being a rare disease, but they didn’t educate themselves about it. Most of the time I was sitting in the doctor’s office, having a staring competition, because they didn’t know how to treat me when I had an infection from the previous lenses I wore. They didn’t know what to tell me when my blood vessels formed, or when my hybrid lenses or scleral lenses were hurting my eyes. Even when I had a dirt bubble that kept forming when inserting my contacts that wasn’t going away, they didn’t know what it was or how to fix it. Luckily, I had my online support group which helped me figure out how to get through each circumstance. A lot of doctors were too prideful to tell me that they didn’t know and were unable to help me; they just took my money and tried guessing, which led me to feel even more helpless. There were very few doctors who never took my money and admitted that they couldn’t help me because my KC was too advanced. They couldn’t fit me for a lens because they were not familiar, but they did care, and those doctors impacted my life in some way.
What inspired you to start your own blog and what do you write about? Was there a specific moment or realization that prompted this decision?
In my early 20s, I lived in denial about having Keratoconus. Seeing my eyesight deteriorate as time went by was a very difficult pill to swallow, and I couldn’t come to terms with it. This wasn’t a wise choice, obviously, because I fell into a deep depression. But I eventually got out of it when I accepted having the disease and came to the realization that though it’s going to be difficult along the way, I had to see the brighter side of things, and as the years went by, I began enjoying my life — the new life where I had less expectations and plans. Leading up to the 10-year anniversary of my diagnosis, I had a thought. I reflected on everything I had gone through, and I remembered researching and feeling like I kept hitting a dead end, unable to find anyone who went through what I went through. The blogs I found were about people who did the corneal transplant, and I wasn’t ready for that surgery, I’m still not ready. So, a voice in my head said: it’s time to share your experience. Not just on what keratoconus is and what type of lenses I wear, I have to talk about my experiences with doctors, working, dating, wearing makeup, and share my story because there could be one person out there who is behind their computer looking for answers on Google — looking for someone they can relate to… Someone who’s going through what I did. I had to give that person hope.
In KC, it is essential to wear specific contact lenses to compensate for the new irregular shape of the cornea and improve vision clarity, which can be challenging. Can you share your personal experience with this and how it has affected your quality of life?
Due to the irregular shape of the eye, people who have KC have to wear Rigid Gas Permeable lenses and there are a few different types. I wear Scleral lenses, which are the bigger type that fits the sclera part of the eye. This, once fitted well by a specialist, is quite comfortable. They’re my best lenses, actually. I’ve had the smaller RGP which only fit the cornea portion of the eye (these were extremely uncomfortable), then I had the hybrid lenses (these were comfortable, but no oxygen got to my cornea, which caused a lot of infections; and if the soft portion had the tiniest rip, the person is unable to wear it — these inflicted so much pain and were quite uncomfortable). I’m quite happy I have a few hours to see and have a semi-normal life, but this took some time to adjust to, since I couldn’t live a normal life. I had to leave my dream job due to KC; the job was too demanding, so I had to choose between my health or my job. I am still in the process of finding a new dream which can accommodate my eyes. In the meantime, I’m at a job I’m good at, which pays for the medical costs and my living expenses just so I can get by. I have to choose a lot between going out or resting my eyes. I get nervous on long flights alone because I wonder if my eyes will act up and I’ll have to take the lenses out. I memorize whenever I'm in a room, house, somewhere I'm staying for a night or more, which requires me to remove my lenses, so that I know my surroundings and wear them to find things. When I don’t think about it, my life is good — it's my normal. However, I must admit that there are days I get a bit down. I could be at the beach, where people are jumping into the water, going under, and I know I can’t do that without goggles. Sometimes, I want to stay up really late and watch movies or long series after work, but I can’t — I shouldn’t. It’s these moments I get quite sad, and it gets even more emotional when I have to constantly be strong for myself and not think about those things. It’s exhausting, and it’s hard to explain to my loved ones, because even though they’re extremely supportive, it’s still difficult for them to grasp exactly where I’m coming from. Don’t get me wrong, I’m enjoying my life, there are just small moments in which my thoughts sometimes consume me.
You mentioned that your outlook on life has changed significantly since your diagnosis. Could you elaborate on some of the key insights or shifts in perspective that KC has brought about for you?
As crazily as KC has turned my life upside down, it taught me how to truly be happy. My happiness wasn’t dependent on anyone else, it was up to me to make myself happy and set the foundation — I had to dig deep to find and unleash that inner happiness. Everything else in life just added onto my current happiness, which made my life more enticing. I appreciated spending quality time with my loved ones, I appreciated admiring the little things which God has blessed the world with (the variety of trees, flowers, mountains, clouds, stars, and people). I observe them carefully and admire their beauty. I try to make more people smile because I realized that just like what I did when I was younger, there are so many people who are hiding their struggles and dealing with battles of their own. I also don’t allow negative people into my life, I made a choice to live a happier life and my partner, family and friends shouldn’t be adding more chaos or unnecessary drama into it. We’re supposed to be there for one another and bring joy to each other's life, because we all have other struggles we are facing. That’s why my circle is quite small. Only good energy is allowed here.
How has the support of friends and family been crucial in your journey with KC, and do you have any advice for others on how to best support loved ones dealing with similar challenges?
My family and friends have played and continue to play a vital role in keeping me sane and motivated, and they add a tremendous amount of joy to my life. Although they don’t know what I’m going through — what it’s like to see through my eyes — their support and help gets me through each day, and it’s their willingness to understand and help that lift me up. If there’s someone who has a loved one (family member, friends, or a partner) who suffers from a disease, my advice would be to just listen to them, don’t disregard/undermine their feelings, and try not to take their outbursts too personally (it’s normally a mixture of fear, sense of helplessness, disappointment, rage, and sadness, all mixed up). Don’t try to act like you know what they’re going through — that’s not what they want — but do go ahead and do your research to know the basics. They just want to be heard and comforted, and even though you may not know what the future holds for them, just tell them that “it’ll all be good, it’ll all work out— just believe,” and you’ll be right by their side along their journey. It’s not going to be an easy ride, but you must be positive at all times, especially when they’re unable to see the light or the good in anything.
You briefly mentioned the challenges of dating with KC. Could you share some insights on navigating relationships with your condition?
This! Ahh dating… What I can say is that you’re going to meet a lot of people, and you’re going to wonder when it’s a good time to share what you’re going through, and honestly, there’s no good time really. You have to listen to your gut when you’re ready to open up, and if they leave, then they aren't your person. Your person isn’t going to let your circumstances be a turn off to them. Your person is going to want to know more, they will want to help and be there for you — be that added joy, someone you can count on and have tummy laughs with. Beware that there are going to be phonies, who are going to say that they understand and they’re going to be there for you but then ghost you or walk away. Again, they are not your person. Your person isn’t going to run away when the going gets tough; they'll be there because they know your heart is what defines you, not your disease or condition. It’s not an easy road, you’re probably going to have to kiss a few (a lot) of gremlins before meeting your person. Also, as cliche as the phrase I’m about to say is, it’s true —it’s going to probably happen when you least expect it, but you must be open to love no matter how many heartbreaks you’ve endured.
You mentioned that KC has influenced your approach to makeup. Could you give us a glimpse into this aspect of your life and offer any tips for makeup enthusiasts facing similar challenges?
My major tip is to invest in proper makeup, like foundation that wouldn’t run, waterproof everything, long-lasting setting spray, etc. Insert your contacts in before doing your makeup, and for those who have a choice, do not rush your makeup — slow and steady wins the race. Tip: avoid buying watery foundation (Lancôme, Estée Lauder, Born This Way are a few of my favorite brands). Regarding my under-eye concealer, I tend to apply it and wait 40 seconds for it to half set. Then I take my time and blend. For eyeliners and mascara, the drugstore variety is the best in the waterproof department, in my opinion (Maybelline). After everything is completed, always set your makeup so it keeps in place through, heat, sweat, tears, and rain. Make sure your makeup is locked in because anything caught under the contacts can be quite uncomfortable. Most importantly, clean your brushes and sponges often!
What are your plans for the future?
This is still unknown. When it comes to working, as previously explained, I'm still figuring that part of my life out. But I do know that I want to get married, start my own mini family, have kids and continue to, most importantly, inspire people along the way as long as I live and breathe.
Do you have any final words of advice or wisdom you'd like to share with others dealing with KC?
My final words would be: It’s all going to be okay, you may feel helpless a lot of times but you’re going to get through it. KC isn’t who you are; it doesn’t define you. It’s just what you have. It is tough, insanely tough, but you’re tougher — you’re a fighter. Whenever something bad happens (contact lens being stuck on the eye, eyes are burning after removal of lenses, mental exhaustion, etc.), close your eyes, take a deep breath, and hold it for a few seconds. Then deeply exhale and repeat twice: “I got this,” because you do get this, and then tackle the problem. Panicking makes the situation worse, so try to always stay calm. Finally, during the moments you have sight, enjoy the little things life has to offer. Go outside and stare at a tree, a flower, the clouds, and the stars — take it all in and appreciate it.
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