People who live with a chronic illness will often talk about how hearing that they “don’t look sick” or that they “look good” drives them crazy. It can feel like a lack of validation. It is a verbal betrayal for the depth of their experience. Mostly it is a sign of ignorance. People don’t know what we go through until they actually walk in our shoes. We can’t expect them to because if we are brutally honest, we did not know either before it happened to us. So, I generally don’t get upset by “well” people who make these comments.
What does upset me is when a fellow sarcoidosis suffer makes judgements about me or anyone else. When they compare my outsides to their insides, when they decide for whatever reason based on the way I look or the way they think I live, that their experience with this disease is worse than mine. This has happened to me and I know it has happened to other people with this disease. I’ve witnessed it. It is disheartening and incredibly disappointing.
While we all walk the same path in terms of having this disease, we do not all walk the same path in life. We are a diverse bunch and while it is this diversity that makes us individual, it is also the very thing that should make us stronger as a group. Sadly, this is not always the case. Instead, I have fallen prey to and seen others become victims of vicious indictments by fellow sarcoidosis suffers that our suffering is not the same as theirs. Their reasons for these attacks are varied, filled with unfair assessments and often lacking in factual information. They are judgements, plain and simple. These attacks are made by those who compare our outsides to their insides.
I know that my outsides and my insides don’t match and because of this, I also know that I have no right and certainly no desire to judge anyone else who has this disease, for how they live or for what the have or don’t have. Instead, I choose to recognize that I am blessed to be part of a network of people who share a common enemy and I draw inspiration from our collective strength. We have a choice. We can strive to be inclusive and supportive knowing our circumstances, whatever they might be, are not a reflection of someone else’s good fortune or pain or we can be divisive and bitter. Having sarcoidosis is not a zero sum game. The appearance of looking good or living well does not increase someone else’s suffering. One person does not gain when another loses and whenever I’ve been unfairly judged by another person with this disease, we both lose.