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Is It Invisible Illness or Not Willing to Be Understood Illness? - Chronically Whole
Is It Invisible Illness or Not Willing to Be Understood Illness?

Is It Invisible Illness or Not Willing to Be Understood Illness?

June 8, 2017 | Posted in: Chronic illness and relationships, chronic illness; support, Chronic Life

By now you’ve probably figured out I’m “sick.” I have issues with that statement for two major reasons. One, to me the word sick has always seemed so temporary. There needs to be a better, stronger word for what I am. But yes, I guess I am sick. I guess I know it. Grumble, grumble, grumble. Two, I don’t want to be sick, but I am.

There’s always the expectations of what the world thinks sick should look like. I don’t fit the bill for most people. Or for most doctors even. Mine are fine, except the ER docs, but my spoonie friends have a lot of issues with doctors taking them seriously. The regular world can’t see my sick. They can’t feel my pain. It doesn’t scream out loud like a broken leg. Click To Tweet It’s not like the flu. It doesn’t have that tidy beginning, middle, and end. It’s still there. Even though I took my medicine and did everything I was supposed to do.

I can imagine that’s difficult to understand for the non-sick people of the world. I don’t get it though. Why are people’s differences so hard to comprehend? I’ve always understood that there are things outside my reach of experience, but when that happens, I try to educate myself, not sit back and say something isn’t so.

All week it has been in the 90’s here temperature wise. My MS causes me to have extreme reactions to heat.  This is not the kind of weather that would send a healthier person to the ER or have them fighting wave after wave of dizziness. Yet I had to listen to nurses and doctors tell me that it isn’t even close to as hot as it’s going to get. Trust me. I know. They told me this repeatedly. While they were putting me in a cooling vest. One would think they’d know better.

Why couldn’t they believe in me? Clearly, all the signs were there. Why the aggravation? Elevated core temperatures and unconsciousness would be hard to fake. This judgment comes from medical personnel. Family and friends, too even. It makes me so sad. I didn’t choose anything this life of chronic illness has thrown my way, but I have no choice other than to fight.

There’s also the mostly well-meaning people who tell me not to let my illnesses be so focal. I have many hobbies and talents, but it’s hard not to notice these diseases from the infusion center, or when it’s hard to breathe, or when you’re taking all the daily pills and injections you need to live.

There are times when my illnesses are all consuming. I don’t like it, but sometimes the pain wins. Click To Tweet Think about your flu. Now think about that flu never going away. This is my life with multiple chronic illnesses. I’m not alone. My chronically ill friends truly get this. I’m thankful for their support. I have a big wish for the rest of the world to get it.

Think of everything you can’t see. Remember, I don’t look sick. My other friends in the battle with me, they don’t either. You don’t get to see the infusion center, the IVs, the breathing treatments. But you can be more understanding. Try and see between the lines. Please, please, please, give compassion a shot.

Ellie is a 45-year-old woman living in South Carolina. She works as a cashier, but is always dreaming of more, she’s just not sure of what more is. Her favorite hobbies are reading, writing and yarn crafts. Her biggest hope in blogging is to help no one ever feel alone in their journeys with chronic illness, or anything else.

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