I Have Keratoconus, An Incurable Eye Disease, And Here's What I Want Everyone To Know About It

I Have Keratoconus, An Incurable Eye Disease, And Here's What I Want Everyone To Know About It

I go through the motions and try to seem normal and that's difficult...

CamSanta
CamSanta
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Life is such a tragic thing, isn't it? Tragic in the way of being so great that you seem high on life. But, tragic in the way that certain things will happen that are completely out of your control.

No, I do not have a disease that I will eventually die from and I am not trying to compare myself to those of have a terminal illness. I wouldn't dare compare my life to someone else who has to question whether they will see the next day. The disease that I have has no cure and at the moment there is no clear cut way to treat it either.

This is my time with it and how I live with it.

When I was in third grade I needed glasses which I thought was normal, my mom, great-grandparents, grandpa, and grandma all wore glasses. I figured I was just like them, they were awesome and being like them was obviously a thing I wanted. Going to the eye appointments was no big deal at that time, I loved looking at the colorful lens and frames trying to see which ones would make me look the coolest.

I can't remember how many times my mom had to tell me that if I break them she would be pissed, basically, my glasses were my life and my first big responsibility. I wasn't called four eyes or anything of that nature to all my other classmates it was also normal to them. I don't remember who, but there were a couple of others that needed to wear them as well, we just the cool kids.

Fast forwarding to when I was just entering my second or third year of college, I was about 21 years old. That's usually the time when you really start living and becoming a true adult, but man was my experience different. My vision was so blurry even with the glasses, I'll tell you the truth with my glasses I was barely able to see my hand.

It wasn't until I had to get my driver's license renewed that I got my eyes checked again. I went to see my usual eye doctor I wish I could remember her name, but I'm sure it will come to me by the end of this article. She noticed something and told me that I had keratoconus.

There's no cure, it's very rare there are fewer than 200,000 cases per year in the United States. In a nutshell, my corneas shape into a cone causing permanent damage to my eyes. Yeah, a great way to start off being 21 right? My vision was so bad that she couldn't make me a new pair of glasses.

So, I guess you're wondering how I live with something with no cure, very little research, and no one to relate to that has the same thing I do. I go through the motions and try to seem normal and that's difficult, but thank god for contact lenses, right?

I can still do all the things that I love to do and communicate the way normal people do, but there are times when if I don't make complete eye contact with you, I'm still listening just a tip if you ever meet me.

Honestly the loneliest I've ever felt. Sure, I've gone through breakups, I've had pets die, and have lost some friends. But, knowing that this disease will always be a part of my life is devastating.

Am I going to go blind? Will I ever be able to see my friends and family members faces again? What do I do? Those were just the thoughts that I had throughout the last couple of years. It is so tough and honestly had some very dark thoughts in my head, ones that aren't needed to be shared in this piece but you get the point.

This is no sob story and I don't want anyone to feel sorry for me, this is simply my narrative of what went down and what I have gone through. I felt so lonely and very sad, but where is that going to get me? I had to go deep within myself and tell myself that no matter how hard it gets, you can't give up.

Life will never be normal and I won't get to see the world the way my friends do with perfect vision. I know one thing is for sure, I will continue to live my life and never get down again. Hopefully, someone with this disease will stumble upon this article and find out that you aren't alone. I was in that place before, it's scary but you can't give up.

I have keratoconus, but that will never stop me from living.

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To The Person Who Feels Suicidal But Doesn't Want To Die

Suicidal thoughts are not black and white.
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Everyone assumes that if you have suicidal thoughts that means you want to die.

From an outside perspective, suicidal thoughts are rarely looked into deeper than the surface level. Either you have suicidal thoughts and you want to die, or you don't have suicidal thoughts and you want to live. What most people don't understand is that people live in between those two statements, I for one am one of them.

I've had suicidal thoughts since I was a kid.

My first recollection of it was when I came home after school one day and got in trouble, and while I was just sitting in the dining room I kept thinking, “I wonder what it would be like to take a knife from the kitchen and just shove it into my stomach." I didn't want to die, or even hurt myself for that matter. But those thoughts haven't stopped since.

I've thought about going into the bathroom and taking every single pill I could find and just drifting to sleep and never waking back up, I've thought about hurting myself to take the pain away, just a few days ago on my way to work I thought about driving my car straight into a tree. But I didn't. Why? Because even though that urge was so strong, I didn't want to die. I still don't, I don't want my life to end.

I don't think I've ever told anyone about these feelings. I don't want others to worry because the first thing anyone thinks when you tell them you have thoughts about hurting or killing yourself is that you're absolutely going to do it and they begin to panic. Yes, I have suicidal thoughts, but I don't want to die.

It's a confusing feeling, it's a scary feeling.

When the depression takes over you feel like you aren't in control. It's like you're drowning.

Every bad memory, every single thing that hurt you, every bad thing you've ever done comes back and grabs you by the ankle and drags you back under the water just as you're about the reach the surface. It's suffocating and not being able to do anything about it.

The hardest part is you never know when these thoughts are going to come. Some days you're just so happy and can't believe how good your life is, and the very next day you could be alone in a dark room unable to see because of the tears welling up in your eyes and thinking you'd be better off dead.

You feel alone, you feel like a burden to everyone around you, you feel like the world would be better off without you. I wish it was something I could just turn off but I can't, no matter how hard I try.

These feelings come in waves.

It feels like you're swimming and the sun is shining and you're having a great time until a wave comes and sucks you under into the darkness of the water. No matter how hard you try to reach the surface again a new wave comes and hits you back under again, and again, and again.

And then it just stops.

But you never know when the next wave is going to come. You never know when you're going to be sucked back under.

I always wondered if I was the only one like this.

It didn't make any sense to me, how did I think about suicide so often but not want to die? But I was thinking about it in black and white, I thought I wasn't allowed to have those feelings since I wasn't going to act on them. But then I read articles much like this one and I realized I'm not the only one. Suicidal thoughts aren't black and white, and my feelings are valid.

To everyone who feels this way, you aren't alone.

I thought I was for the longest time, I thought I was the only one who felt this way and I didn't understand how I could feel this way. But please, I implore you to talk to someone, anyone, about the way you're feeling, whether it be a family member, significant other, a friend, a therapist.

My biggest mistake all these years was never telling anyone how I feel in fear that they would either brush me off because “who could be suicidal but not want to die?" or panic and try to commit me to a hospital or something. Writing this article has been the greatest feeling of relief I've felt in a long time, talking about it helps. I know it's scary to tell people how you're feeling, but you're not alone and you don't have to go through this alone.

Suicidal thoughts aren't black and white, your feelings are valid, and there are people here for you. You are not alone.

If you or someone you know is experiencing suicidal thoughts, call the National Suicide Prevention Hotline — 1-800-273-8255


Cover Image Credit: BengaliClicker

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It's National Eosinophil Awareness Week And More People Should Be Talking About It

It's time to raise awareness about eosinophil-associated diseases and support those, including myself, who are affected.

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For anyone who is unaware, May 19 to May 25 is considered National Eosinophil Awareness Week as recognized by the American Partnership for Eosinophilic Disorders (Apfed) since 2007. The purpose of this week is to raise awareness and help educate individuals on the various eosinophil-associated diseases. Despite its existence being virtually unknown to many people, this week has become very significant in my life and I think more people should be having conversations about it.

If you had asked me about eosinophil-associated diseases two years ago, I wouldn't have been able to say a single thing besides maybe defining an eosinophil the way I learned to in my AP Biology class senior year of high school. But as of a few months ago, it has officially been one year since I was diagnosed with an eosinophil-associated disease — something I never imagined would happen in my life. While I won't share too much of my own experience because it's honestly quite personal and still a little sensitive to discuss, it's safe to say that eosinophils completely changed my life.

I was fracturing bones like it was my job — I think I had upwards of nine stress fractures in my legs and feet in a year and a half time period. I had to stop playing sports my senior year of high school and couldn't run at all. I was nauseous 24/7. I was rapidly losing weight to the point where I had lost close to 35 pounds and none of my clothes fit me. I couldn't swallow anything, including water. Eating was painful. I had no appetite.

I was sick and in pain ALL the time to the point where I would get emotional or even cry.

I missed school days, tests, exams, social events, and eventually had to quit my job for an entire summer because even getting out of bed was hard for me. Ultimately, even the decision about the college that I chose to attend was partially based on my health and the doctors I would need to visit frequently.

But the most significant thing was that I was experiencing severe depression and anxiety and was honestly just straight-up scared. Think about it: I was experiencing a wide range of life-altering symptoms yet no one could figure out why and even when they did, there was no cure and only limited options for treatment. Unfortunately, this is the reality for many patients and their families. The process of diagnosing an eosinophil-associated disease can take years and require pretty much every medical test you can even think of because these diseases are all classified as rare diseases.

I was experiencing symptoms for a year and the journey to an accurate diagnosis took about a year after that. The journey itself was not easy, as it involved numerous doctors and countless medical tests to eliminate other potential diagnoses like cancers, parasites or even celiac. Since then, I have been involved with treatment for a little over a year. For me, treatment involved several medications and steps, including gaining the weight I had lost.

But the main piece was cutting pretty much everything out of my diet, meaning no gluten, dairy, soy, eggs, seafood, or nuts. Gradually over time this treatment involves reintroducing the foods individually (each for a three-month period) to see what can be tolerated or which foods make my eosinophils act abnormally and then restricting my diet accordingly.

Since starting treatment my life has been gradually changing in a positive manner, which is something I couldn't have imagined when I initially became ill. Yes, I will still be sick for the rest of my life and experience the chronic waxing and waning of this disease, but hopefully years of experience and knowledge will make me better equipped to handle it. One day there may even be a cure. But until then I will continue to raise awareness and participate in National Eosinophil Awareness Week in solidarity with the few who are also sharing in my experience living with an eosinophil-associated disease.

While I wrote this article with the intention of participating in Eosinophil Awareness Week by raising awareness and educating (to some extent), it was about more than that. I wanted to give you a synopsis of my story and the challenges I face to make this week more understandable and more real. This was because I know that eosinophil is not only challenging to say (even I struggle) but also challenging to conceptualize.

If you're interested in learning more or you're still confused, I recommend doing some quick reading on Apfed's website because they are extremely helpful in the way they simplify the complex information.

If you would like to see what you can do during National Eosinophil Awareness Week, you can also click here to visit Apfed's day-by-day guide for the week, which included some fact sheets, information about wearing magenta to support the cause, and other information about individual participation.

Editor's note: The views expressed in this article are not intended to replace professional medical advice, diagnosis, or treatment.

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