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A confident adult with glasses looks back on their unsure younger self as a child.

My Diagnosis Journey: Christine

At a very early age, I knew that I saw things differently than most.

I vividly remember going to the school nurse’s office each year to complete the vision test. I dreaded this time of the year because I felt as if no one believed me when I would tell them that all I could see was the big E, with or without my glasses.

With or without my glasses, I saw the same

My family, and even strangers, would say things such as, “Why are you not wearing your glasses? Are you trying to be cute or something?” I would constantly reiterate that it did not make a difference if I had my glasses on or off because I would still see the same either way.

After several years of “failing” the vision test, my mom took me to a low vision specialist. After trying several prescriptions and eyeglasses types, I underwent an extensive assessment at the Philadelphia School of Optometry.

A diagnosis confirmed what I already knew

By this time, I was 11, and the tests confirmed what I had already known: no matter how strong the eyeglasses prescription was, it would not help.

I was diagnosed with macular degeneration (MD). The doctor said that there were blank spots in my retina that impacted the clarity of my vision. As a result, I needed to be much closer to things than the average person to make out specific details. I was relieved to finally have a diagnosis that confirmed what I already knew to be true.

Stress can make my vision worse

Later in life, there were times when I thought my vision was getting worse, because what was usually clear for me to see at times became blurry. As you can imagine, I got scared and immediately thought my vision was starting to regress. I booked an appointment and went to a retinal specialist, where I learned that stress impacts my vision.

The specialist gave me an elaborate scientific answer as to why that happens; however, it really does make a lot of sense that when I am not thinking clearly, I cannot see clearly. For the most part, the baseline of what I can see is consistent day to day; however, when I am under a high amount of stress, what is usually clear for me to see becomes a little blurry. Thankfully, when I reduce my stress and give my eyes a break, my vision will return to my baseline.

Focusing on tools that support my vision

Other than working to reduce stress, I have not had any treatments or taken medications for my MD diagnosis. About a decade ago, a retinal specialist informed me that there was research on stem cells to treat MD, but they were at the early phases of the testing. I have not heard about any updates since then.

As a result, I focus on tools I can use to support my vision as it is daily. I use a Ruby, which is a handheld portable magnifier, and ZoomText on my cell phone and computer. One of my favorite lines to say with my friends and family is, “Can I borrow your eyes for a second?” The people in my community know that line means, “Can you help me read something?”

Struggling in school without accommodations

My journey with MD has been a roller coaster. In the beginning, I was happy to finally receive a diagnosis that helped give context to my experiences. However, when I went to high school I felt more embarrassed, and since I did not have reasonable accommodations, I struggled a bit in school.

Once I moved to Arizona, I started to become more accepting of my diagnosis and began to receive the accommodations that worked for me. While in college, I felt the most confident that I ever felt about my visual impairment, and I believe it is because of the people I surrounded myself with and the accessibility of resources that I needed.

The double-edged sword of asking for help

Post-college and entering into the workforce was, and continues to be, an interesting experience for me. Over the years, I have learned various tips and tricks for how to navigate the world with a visual impairment. So much so that unless people saw me reading a document with small font, they would not even know I have a visual impairment.

At times it feels like a double-edged sword, because when I finally need to ask for help, I feel vulnerable. I often must educate others on my vision to receive help.

Dealing with 'the point'

One common occurrence is “the point.” I ask for help and the response is to point to where it is, whether on a document, a menu, or an aisle sign at the grocery store. Each time this happens I must make the decision on if I am going to educate the person on my diagnosis, repeat the question in a different way, or use my resources.

It is interesting because most people often share with me that they forget that I have a visual impairment because of the way I navigate the world, whereas I feel the exact opposite. My visual impairment is at the front of my mind constantly because of the way I navigate the world.

Reminding myself of all the things I've accomplished

I have this mantra that I say from time to time: “If I saw what other people saw, I would do what other people do.” If I am honest, there are times when I need to perform what I think would be a simple task if I did not have MD and I get frustrated. Sometimes the frustration is fleeting, and sometimes it lasts longer than I would like. I eventually get out of the frustration and remind myself of all the things that I have accomplished living with MD and seek support for the things I struggle with.

My best friend, Caitlin, recently shared this affirmation with me: “I am still strong even when I ask for help.” This affirmation really resonated with me, and I hope you remember this on the days you need it most... at least that is the way eye see it.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MacularDegeneration.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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