1. But you look so good!. Yes, still I have days when my whole body is hurting and aching.
2. Most of the days I go outside is to visit my doctors. Yes, I appear confident and calm but sometimes I am anxious what new fear will unfold.
3 . When I meet my friends and celebrate my day. You don’t see the effort I put behind it and the upcoming week I have to spend in bed and rest.
4. When I cry alone because I don’t want to see my family and friends to see me like this and feel helpless.
5. When something as trivial washing my hair needs to be planned in advance! Sit in the shower, take breaks and afterwards rest the whole day because my hands are aching due to the exhaustion.
6. The loneliness that creeps up on me when I see everyone moving forward in their life and I am fighting daily to survive.
7. Sometimes when I have to chose treatments, knowing well what can help me but I can’t afford it. Choosing and postponing the treatments for later.
8. Days when I have to depend upon others to provide me with food and help me my day to day needs. Because I am having a low energy day and if I pushed myself more, I will have a crash.
9. Though appearing totally fine and healthy, my illness still impacts every aspect of my life and I have to make every day choices depending upon the kind of day I am having . Whether it’s a low pain day and I can do my tasks. Or it’s a bad pain day and I have to lie down doesn’t matter how important it was for me to do that particular task.
Though invisible my illness is as debilitating and painful as any visible illness.