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A commonality among humanity is that we all want to be understood. People who say they don’t care are probably not being honest with themselves. Being understood validates who we are and what we experience. Being understood makes us feel acknowledged. Being understood frees us from loneliness. There is an intimacy to understanding another human being.

I’ve been thinking a lot about what it means to want to be understood especially as it relates to my sarcoidosis. I do want people to understand, yet I know very few can unless they have walked a mile in my shoes. So, I’ll settle for acceptance that what I say about having this chronic condition is true. I’m okay with acceptance because this is a form of understanding, even if not directly.

What I do not abide and what I fully admit that I hate, is pity. I hate it when people pity me for my disease but I hate it even more when other people with the same disease seek pity. Unfortunately, there are those who relish dwelling in their own misery. There are those who seek to make others as miserable as they are. There are those who no amount of consoling quiets a desire to find the negative. I have no tolerance for these people and that’s because they make it much harder for those without our disease to even want to try to understand us.

I understand the dark lure of wanting to garner pity because I have a difficult illness that can be very isolating at times, but seeking pity is a useless activity. Nothing good comes of it. Pity grabbers are like misbehaved children who seek attention even if it’s bad attention. Pity seekers don’t really want to be understood. They want sympathy not empathy. They wallow in their disease like a pig in stinky mud. They relish being sick which is actually sick in and of itself.

When I write about my disease, it is to seek understanding. I am not looking for pity. When I write about my disease, it is to connect with those who can relate and to explain to those who cannot. There is nothing wrong with searching for understanding, validation and clarity but seeking pity is pathetic. The pity seekers among those of us suffering with chronic conditions set the rest of us back. Their negativity is a drain on our collective experience. They are the ones who make our experience a lonelier one because they push people away.

Now, I’m not saying that those who suffer with a chronic condition cannot have their moments. Everyone has moments of discontent, fear and uncertainty. It’s human nature to sometimes question why something bad is happening to you and to be a little angry about it. I’ve certainly had my own moments! But, those who live in these places, get stuck in them and then relish being there, they are an entirely different breed and they don’t seek understanding. They seek something else entirely, and it is not healthy. They want to be defined by their illness.

Most of us don’t want that. Most of us just want validation that our experience is real. Most of us know that we are not the sum of our sarcoidosis. Most of us just want acknowledgement and compassion that this is a tough journey. I certainly know that I am more than my disease. It doesn’t define me but it is part of me. It does live inside me and I have to accept this and all that it means. I don’t however, have to feel sorry for myself. Nor do I want that from you.