Keeping My Diagnosis A Secret
I don’t know about you, but I kept my diagnosis of age-related macular degeneration (AMD) secret from everyone except my closest family members.
Why the secrecy?
I had many reasons for not sharing my diagnosis and I have to admit a bit of vanity was in play. After all, it is a disease of the elderly, or so I thought. After living with AMD for several years, I now know it can strike at a younger age. Many in our community were diagnosed in their 40’s. At the age of 72, I consider that to be young.
Early in my diagnosis, I didn’t even think about sharing my diagnosis. My dry AMD was found in the early stages and seemed to be no big deal.
As my condition advanced to the intermediate stage, it began impacting my life significantly. A factor for not speaking out was not wanting to be viewed as handicapped. My usual response to “how are you” is a quick “I’m great”! I did not want the pity that having a disease known as a leading cause of blindness worldwide was sure to generate.
I kept my secret about having AMD for a long time. People might have noticed how large the font on my phone was but at my age, we all seem to need bigger text.
The secret's out
The ladies of my church meet monthly and share lunch and a devotional. I was asked to present the devotion at our next meeting. I found a topic and resource material, and prepared for the meeting.
When it was time for the devotion I got out my notes and to my surprise and embarrassment, I couldn’t make out any of the words. At home where I read, I have a powerful lamp to make reading easier. I never considered the light in our church might not be adequate for me to read. I shifted nervously in my chair and finally confessed my predicament.
The ladies were very understanding as I explained that I have macular degeneration and have difficulty reading small text or in low light conditions.
Gaining support from my circle of friends
Through an embarrassing event at church, my condition was no longer a secret. I gained the support of my caring church family. Today they are my biggest cheerleaders. I share the articles I write for the macular degeneration community with them. As a result, I have raised awareness about a disease that affects as many as 11 million people in the United States.
Recently one of the younger ladies in our church was diagnosed with early AMD. Her optometrist diagnosed her but gave her very little information. Because I was talking openly about the disease she sought me out. I was able to reassure her and calm her fears. I recommended she join maculardegeneration.net where she can find information and the support of a community that “gets it."
Asking for help
While grocery shopping, I was having a hard time opening those pesky produce bags so I asked for help from a store worker explaining my problem. She happily assisted me. Today I am no longer embarrassed to reveal that I have AMD. I have found that I have nothing to lose when sharing that I have AMD and much to gain.
Do you keep your macular degeneration diagnosis a secret?
Are you aware of assistive technology for AMD?