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.
Have you introduced yourself to the community yet?