It’s interesting to me that people who share the same disease that I do think that my life is somehow charmed, that I have more than they do, that I am better off. I would never judge another person’s insides by their outsides or by my own. I would never presume to know what they are experiencing even though we share a rare disease because for all of us with this disease, the journey is difficult, lonely, overwhelming and discouraging. So, to be somehow judged for having it “better” is odd and a little cruel. It’s also ironic because just about everyone I’ve ever talked to with this disease has expressed frustration at one time or another about being judged for not looking sick. Most of us understand that our disease is invisible.
Recently someone who also has sarcoidosis told me how “lucky” I am that I no longer work. She said this very matter of factly, as if it were a no brainer and never once considered how not working actually makes me feel, that there are hardships for me and my family for having made the decision to quit. Clearly I must be “lucky” because I can stay home all day feeling lousy and gasping for air. Clearly I am “lucky” because all the pressure is now on my husband to “take care” of me. Clearly I am lucky because leaving a prosperous career has created a financial stress for us. Clearly I must be “lucky” because long lonely days stretch out ahead of me day after day. Clearly I am “lucky” because I am no longer able to be fully engaged the way I once was in my life. Clearly I must be “lucky” to have lost a career I worked very hard to build. It’s all relative. I would much rather be physically healthy and be at work, doing what I used to do and what I loved. What I do now, is worry, feel guilt and struggle with the idea of going back to work all the time. I struggle to find my purpose and I wonder what value I still have to offer the world.
I would expect this kind of judgement from those who have never suffered the fate of a chronic life changing condition. I would expect them to say something so foolishly ignorant to me because they simply could not understand. I never dreamed someone who also has this hideous disease and who has walked in similar shoes would choose to be so thoughtlessly callous. We all have to make the decisions we believe are best in our own individual situations and there should be no judgement or comparison. I know people who are far sicker than I am who continue to work, some because they want to and others because they have to. I know people who have this disease who are financially wealthy and I know people who have this disease who are poor, some who became that way in part because of this disease. I know people who have remained happily married despite this disease and I know people who have failed to keep their relationships successful after their diagnosis. I know people in remission from this disease and I know people waiting for organ transplants.
Those of us with a chronic condition walk a similar path but each of us has our own independent journey to navigate. Instead of feeling envious of those who have more than me, I try to be grateful for them. Instead of feeling superior to those who have less, I try to better appreciate what I do have. Instead of comparing my disease progression to someone else’s, I try to stay focused on the things I need to do to be as healthy as I can be despite what this disease tries to do to me. I know I have it better than many and worse than some but I also know that’s just life and instead of spending my time comparing my insides to someone else’s outsides, I just try to live as well as I can and to be encouraging to others in similar situations. It’s not for someone else to decide that my life is “charmed”. I know my life is good and it is good because I choose to focus on the good and deal with the bad. I make gratitude a daily practice and I strive to be inspiring and inspired by others who share this difficult voyage.