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I’m going to put a new twist on a touchy subject for those of us who have sarcoidosis and other invisible illnesses because, over the years that I have now had sarcoidosis, it’s something I have come to see very differently since I was first diagnosed.

One of the things I often hear people with sarcoidosis say, is how much they hate it when people tell them how good they look. I get it. I used to hate it too. It can feel like our experience, like the veiled war our body is waging against us, is being discounted. We already experience enough ignorance from the medical community we are forced to deal with, that any additional belittling of what we go through, simply feels like a deeper injustice. Depending on the tone, sometimes when people tell us that we don’t look sick, there is a hint of judgement and we are made to feel like liars. We are NOT liars!

All of that being said, I have come to view this comment and ones like it in a new light now that I’ve had this disease for quite some time. I have learned to not only accept the confusion “the well” feel toward me, I have come to better understand the part I play in that confusion. I really don’t look sick. I don’t look sick, in part, because I choose not to look sick. I work hard at it too. I take care of myself…physically and emotionally. Doing this means that I am not going to “look” however it is a sick person is supposed to “look”. In the face of unyielding physical discomfort from a disease that robs me of air and leaves me feeling like a wrung out dish rag, it really would be easier to let myself “look” sick, to not make the effort to get up and get dressed. I can’t deny that there are days when my bed does call my name and the thought of staying un-showered and in my PJs all day is tempting. Part of surviving this disease, at least for me, is to resist that call as much as I can!

I regularly exercise too. I appear to be in good shape and, I am in good shape for someone with this disease! I get dressed in clean and stylish clothes almost every day even though I sometimes have nowhere in particular to go. I wear make up. I get my hair done. I smile a lot and I try to find some joy in every day, despite how much physical pain I might be in. I don’t spend a lot of time talking about my symptoms. I try not to dwell on how badly I ache. I quietly live with my sarcoidosis because it is simply part of me now. I don’t try to hide my disease on purpose…exactly. I want to look good for myself. I want to live my life as normally as I can, despite whatever this disease is doing to my insides. Part of doing that is looking as good as I can. It’s what I would do sick or not. It’s about self respect for me, about still trying to like myself even though sarcoidosis tries to trick me into thinking I am worthless.

So, when I am putting all this effort into looking like what others would call “normal”, how can I actually be mad at them when that’s what they see? I can’t. It’s also a waste of energy. I find being frustrated by the understandable ignorance of those who have not suffered with the troubles, pains and fears of living with in invisible illness, is a useless endeavor. Now when someone tells me that I don’t look sick, I take it as a complement. It means the effort I am putting into trying to live normally might actually be working! I thank them and I mean it. But, I also take it as an opportunity to educate. I politely explain that looks can be deceiving. I find that when I do this, without anger or bitterness, people are interested and because they are interested, I leave them educated instead of annoyed with me for getting defensive and, maybe…just maybe…they will think twice before judging someone’s insides based on what they see on the outside.

I like that I get told that I don’t look sick. I like that I am able to carve out some normalcy in my life. This is just one way that I do that. In full disclosure and in all honestly, I must admit that before I was diagnosed with sarcoidosis and, before my insides decided to take a stab at me, I too had no idea what those with invisible illness go through. I was ignorant and I no doubt, said things, without intending to cause harm, that probably did hurt people engaged this very private struggle. So, before I get angry with people who tell me that I don’t look sick, it has helped me to remember my own ignorance and the innocence in it. I meant no harm…I just didn’t know any better. It also helps me be honest about the fact that I play a role in the confusion others might feel about my being sick. I really don’t look the part because I don’t want to look the part. I don’t want to be sick…so…I’m glad I don’t look on the outside, the way I feel on the inside. How ugly I would be! For me, this is one small battle I feel I’ve won! For me, being told that I don’t look sick is now cause for celebration instead of anger.

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