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Monday, October 2, 2017

STOP ASSUMING I DON’T CARE

ABOUT “INVISIBLE” CHRONIC ILLNESS 

(STOP ASSUMING I DON'T CARE)

I’m sharing this using my own words. There are a few versions going around. 

All I ask is that you read this all the way through. Please. Thank you.

There are many illnesses that people walk around with every day which are invisible to everyone else. 

There is a huge gap between the place where someone is diagnosed with one of these illnesses, and the place where they are considered “disabled“ by the government.

This means that there will usually be decades where the person walks around with the crushing fatigue and pain of a major illness, all while being expected by the rest of the world to compete with healthy people, to do what healthy people can do. 

At home and on the job, there is often the perception that perhaps these people are lazy, crabby, grouchy or bitchy, that they have a bad attitude, that they don’t care, that they are negative, that they don’t have any drive or ambition, or that they don’t want to do well.

Nothing could be further from the truth. The truth of the matter is that they’re using every bit of energy they have to be able to get up and shower and walk through the day and do tasks that you find so simple and take for granted.

Yes. I have Rheumatoid Arthritis, Celiac Disease, Sjogrens Syndrome, Reynauds as well as an anxiety condition. The Arthritis, Sjogrens and anxiety have historically been the ones that kick my ass. 

I am not sharing this for sympathy. And I’m not posting it just for myself. I’m posting it so that people might get an understanding.

The person that you run into every day who you maybe think has a bad attitude, is a subpar worker, or is just a bitch or a crabby old fuck… Maybe there’s more to the story than you realize. 

For people with “invisible” chronic illness, plugging themselves into the same expectations as a healthy person is one of the hardest things that they have to do every single day. It takes superhuman effort every day.

The truth of the matter is that for the proper care of their body they need about twice the amount of time off and rest that you do as a healthy person. But that’s usually not something that they’re able to get. There isn’t an amount of rest that’s going to “cure“ them. They are always going to need more downtime and rest than a healthy person. Always, for the entire time that they are living. And this customarily does not get better with age, it gets worse.

This is why so many of us will run around trying every imaginable thing for improvement. Medications, supplements, diets, meditation… Every possible option that comes down the pike. Something that lessens pain, gives more blessed rare energy, helps bolster the mood without 1,000,000 side effects. We will usually try them all. We spend an ordinate amount of time reading and researching trying to find ways to help ourselves.

Sometimes this comes across as being selfish or self focused. It isn’t that. It’s really just trying to find ways to meet the world’s expectations without feeling like you’re falling on your face every day.

So this is for everyone who deals with invisible chronic illness. I for one see you, even on those days when other people don’t. I know what you deal with every day. I know what it’s like for you to get up and do the things that everyone else takes for granted. 

I am very grateful for my life. I am surrounded by people that I love, even in the most peculiar and difficult of circumstances. I have goals that I work toward and that I am meeting. Amazing things happen to me all of the time… This weekend was a testament to that. Every day is a source of awe and wonder for me.

I’m not writing this to be negative. I’m writing it to build awareness. As you go through every day life just know that you probably know more people with invisible chronic illness then you realize. We are all around you, doing what we do. It’s so much more difficult than you could possibly imagine. So if we sometimes have a day when we’re not blowing sunshine up your ass,  please give us a pass. We really are trying our best. And we will continue to do so every day.

Thanks for listening.

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