I came across a blog the other day that gave mention to this past week as the Invisible Chronic Illness Awareness Week. Correct me if I’m wrong, but unless you have something manifesting on your skin, or you are coughing up a storm, aren’t all illnesses invisible? Most have no real outward symptoms. Of course I am sure to get emails telling me I am wrong.

Anyhow, I noticed a trend in health blogs these days. People complaining about being annoyed that they are told “you don’t look sick.“ Really? You think that is annoying? Do you honestly think I want to walk around looking like I have sarcoidosis, heart failure and pulmonary hypertension (however that is supposed to look)? Oh hell no! I want to look normal. I want to be normal. Actually, I am normal, except for a couple of glitches.

So if someone were to ever say to me that I don’t look sick (which they should have no cause to tell me because I don’t go around broadcasting my issues), I would take that as a compliment. My doctors tell me that all the time. They always say they are fascinated by the fact that despite my scaring, my lungs sound clear and I don’t look like there is anything wrong with me. That is a good thing. That does not piss me off. That would be kind of crazy to get mad about that. My wife has a wonderful moto that I have adopted – Unless it affects you directly, you don’t need to know.

I have a pet peeve with people that tell you there entire line of troubles and health issues the moment they meet you. Most would be quick to respond that they are looking for support. I would say that there is a very fine line between needing support and needing sympathy. Thriving on sympathy only exasperates the issue. It feeds it. Makes it stronger. The more sympathy you need the more you will outwardly manifest the illness so you can get sympathy, even and mostly, subconsciously.

Another complaint is that my friends don’t understand that I am sick and expect me to do the same stuff as before. Uh, get new friends! Think about that for a second an let it sink in. You are the one that changed. You are the one that got sick and is different. Not them. So why should you expect them to change to accommodate you?

Here’s a scenario for you to consider. You have a really good friend that you love hanging out with. You go to clubs on Fridays, surfing on Saturdays, and rock climbing on Sundays. He/she comes to you on a Thursday and says “Listen. I joined this new association. It’s called sarcoidosis. The rules say that I can’t hang out and do the stuff we used to do. I can only sit on my couch and look at TV, and every now and again I have to sigh and moan a bit. Then you are supposed to ask me if I am okay every five minutes and tell me that you feel sorry for me. Okay? So no club tomorrow. There is a marathon of Antique Road Show tomorrow. Your place or mine?”

Do you really think that you want to hang around someone like that? Most people won’t, but a real friend, a true friend, one that would accept you for you, no matter what happened to you in life, would stick around and join you on that couch and even rub your foot for you. Not because they had to out of loyalty, but because they want to out of love.

So if there are people out there that you call “friend” that have made a 180 degree turn and headed out the door of your life, don’t make yourself sicker over it. Be glad, because they were not a true friend in the first place. You wanted them to be, and fooled yourself into believing that they were, but no, they were not. And you knew that. Deep down inside, you knew that, but don’t want to admit it.

So to sum up it’s simple. Don’t go broadcasting that you are ill to any and everyone that would listen. They don’t really care. Don’t do that. By doing that your are giving your illness strength. A need to exist. And if you do tell someone and they tell you that you don’t look sick, say “Thank You” an be happy. Maybe the outward manifestation may one day continue to move inward. For those days you feel like crap, believe me, there is no hiding it. You would look like crap, so don’t worry about being told you don’t look sick.

And for those friends that have not stuck to your side, don’t hate. That negativity is the last thing you need to feed to yourself, because it isn’t going anywhere but within. Let them go. It’s not their fault you changed. Let them go with love. They are not meant to be with you in this part of your journey. There are times you are going to have to ride the train alone. Hold on to that strap as tight as you can, accept that and move on. Someone that understands your journey may be getting on at the next stop.

Originally posted September 16, 2012

Written by Basil Rene

I maintain two separate blogs. One is LifeAsAnAnomaly.com where I discuss my life with sarcoidosis and the other is AChefTalksFood.blog, where as the name implies, I talk about food.

8 comments

  1. Very heartfelt piece! 🙂
    Due to my wife’s Wison’s Disease, with complications, including to needing to be fed via a stomach tube and not being able to walk far well, we will not be going to the local fair — which is going on right now — like we always did in the past. I don’t mind one bit and i love her more than ever. We don’t go to restaurants but restaurants mostly serve crap anyway. I don’t mind missing out of a lot of crap.

    Liked by 1 person

  2. My boyfriend’s sarcoidosis being so very visible, I can only agree with you. Having reddish granulomas on his face, people usually don’t make comments, but their attitude does change when they spot them. And he sure doesn’t want or deserve ”pity” or empty sympathy. I just hope his treatment will make the marks fade and his voice clearer, so he ”doesn’t look sick” anymore…

    Liked by 1 person

    1. People are terrified of their own mortality and seeing anyone “sick” scares the heck out of them. When I use my oxygen in public people look away because I am not the stereotypical 80 year old oxygen user so I think they automatically assume I haver cancer and refuse to look at me. Sometimes I just feel like going up them and going “BOO!”

      Like

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