I have multiple identities. I have shared in the past that I am: female, black, single mom, founder of Purple House Project PA, Case Management Coordinator at Action Wellness, homeowner, and visually impaired. Typically, I have a subgroup of friends for each identity, however, the exception is a friend group with people who share my experiences of living with a visual impairment.
Meeting people who understand vision loss
This changed eight months ago when I met my good friend Andrea at the Health Union Connexion conference. We instantly hit it off and for me, it was so refreshing to be around someone who understands what it’s like to have macular degeneration. Prior to meeting Andrea, who I efficiently call Transformer, no one in my life shared similar lived experiences when it came to my visual impairment. More often than not I felt isolated when it came to my visual impairment and for a long period of time even insecure.
An opportunity to process how my vision loss affects me
At the beginning of 2019, a beautiful soul named, Briana, informed me about an opportunity through Health Union to share my experiences. I was so excited about this opportunity; I feel like this is the identity that impacts me the most and rarely do I get to process how my vision affects my life.
Assumptions that I can complete tasks the same
There is a quote that resonates with me “The worst part about being strong is that no one ever asks if you’re okay.” I feel like this quote is parallel to my experience living with an invisible disability. People often assume that I am able to complete tasks the same way my able-bodied counterparts can and that is more often than not untrue. While I can complete many tasks, the process is, more often than not, different and takes more time.
I didn't want people to treat me differently because of my vision loss
Up until recently, I rarely shared about my struggles living with macular degeneration. Typically, the most I would share is what accommodations I need in order to execute a certain task. I think that the main reason why I chose not to share is because I don't want people to pity me or treat me differently once they find out I have a visual impairment.
What has writing for MacularDegeneration.net been like?
Writing these articles has been truly cathartic and has given me the strength to advocate for myself, even when it is uncomfortable. My mantra for the year is “Say it even when your voice shakes,” which is metaphoric to writing these articles. As you can imagine some of the topics I discuss are very personal and it’s often uncomfortable to share with the world your raw feelings.
What have I learned from writing about my experience with macular degeneration?
What I have learned through this process is that sharing my experience can change lives. Recently I have realized the power of sharing this part of me to inspire others. These articles provide me with an outlet to educate and provide insight about what MY experience is like living with an invisible disability and most importantly inspire people. It is so crazy that the thing that I am most insecure about is the one that is changing my life. Recently I have found myself in rooms that I would have never imagined and all it took was for me to be brave enough to share my story… at least that’s the way eye see it.
Editorial Note: If you are interested in becoming an advocate for MacularDegeneration.net, please e-mail us at firstname.lastname@example.org.
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