The External, Internal, and Acceptance
I never knew that one of the toughest battles to face after my diagnosis was the one of external and internal expectations. My own expectations for myself, my expectations of other people, other people's expectations of me, and so on.
To begin, the internal aspects:
I'm fortunate to be functional enough to work, walk, and exercise. Fatigue, cognitive, and visual symptoms are what I deal with everyday, but I'm lucky to be "mild."...... Or am I? This question is the wrench that is thrown into this "I-should-be-happy-to-be-lucky" mentality and the one that has caused a lot of damage to my psyche as a patient. It was a vicious cycle in which I ignored my needs as a patient and constantly pushing myself to the point of agony. "My arm feels like it's being poke by a million pins, but I should be lucky that I can even move my arm. I'm fine!" "I'm so tired, I really can't get out of bed, but there are people that physically cannot even move. I'm fine!" "I can't think... But there are people that are worse off than I am. I'm fine!" I myself ignored my needs of being a patient and treated myself as if I was fine. My own expectations for myself were crushing me.
To make matters worse, the external aspects didn't really help either:
Everyone hears that despised "But you look so good!" As if that's supposed to be a compliment. Well, unfortunately, the close people in my life treated me like this. At first, they were very supportive, but as time went on, things changed. Since my family didn't "see" my symptoms and I noticed that they started undermining my struggle by treating me as if everything was fine. Everything was not fine. I was still coming to terms (I still am) with my diagnosis but my family already moved on. Friends would know of my struggles, but because they didn't know how to deal with my diagnosis, they just acted like nothing was wrong with me. Other's expectations of me were crushing me.
The combination of these unreachable expectations started to compound, and I became depressed and suicidal. I felt as if no one was there to support me. I felt that there's no use in trying. I couldn't meet these expectations, and I knew that I had to be strong in spite of all these struggles to survive. I gotta be strong. I gotta be strong. I gotta be strong. But I'm not. What can I do? I'm only one person. But I can move, I can do something. But can I? I can't. I just need to push myself. But I'm so tired...
My own answer:
My fiance helped me realize that I need to take care of myself as a patient. She takes care of me and asks me if I'm okay when I looked stressed. When I look tired, she would suggest that I take a break. These were the things I needed to not be overwhelmed by this diagnosis. As my expectations for myself started to loosen, I was able to give myself room to be a patient and to be strong (not just act like I was). I can't change people's expectation of me. They're still going to say that "I look fine," and treat me as if I have fully charged battery everyday. But I know that I have to take care of myself and give room for me to grieve, accept this diagnosis, and truly be strong.
By accepting our "patient side" and giving ourselves room, I feel that we can find true strength in our battle with this disease; to be able to push ourselves beyond, and persevere until the day a cure is found.
Have you experienced any of these vision symptoms? (select all that apply)