I have begun to think of RP as not only an invisible disease but a silent one as well. I don’t generally have the tendency to feel sorry for myself or to draw a lot of attention to the fact that I am losing my sight. I don’t see the purpose of allowing the RP to defeat me and I also don’t want to make other people uncomfortable. It is as if I have somehow silenced my own disease by not allowing others to recognize my struggles. This is particularly true with my family.
I have an older brother who has suffered with serious illness for most of his life and is now going through his third bout with cancer. I know that my blindness pales in comparison to his struggles and I know that my parents are in a constant state of worry and exhaustion as a result of being my brother’s primary caretakers. For the past year, we have all been consumed with taking care of him and I have tried to be especially careful not to talk about the RP. But now. on the eve of the appointment with my specialist, I am feeling afraid and resentful that my disease, however minor in my personal family schematic, goes unrecognized. I also know that I am the one who has created the silence around my vision loss and the person I should truly be resenting is me. My family is loving and supportive and I know they would be there for me if I told them I needed them. I guess I don’t want to always have to ask. I want them to acknowledge that, although I haven’t suffered a fraction as much as my brother, I do have struggles related to my RP. And then comes the guilt.
Who am I to complain about a little impending blindness when my brother has faced death over and over again in his 47 years? I have an amazing husband and great friends and besides RP, I have my health. I feel so guilty for wanting acknowledgement from my family about my failing sight; wanting them to recognize that it is actually really hard dealing with the limitations and the fear that come with RP. I feel juvenile in my desires for my disease to be noticed. And I feel so selfish complaining about my struggles when my brother’s situation is truly tragic.
Looking at all of my brother’s suffering definitely puts my own fears into perspective, but I would still like to hear that they recognize how frightening it must be to be going blind.