Day 18: What Health Cliché Really Bugs You?

“But You Don’t Look Sick” …Even with all the posts, articles, memes and pins that are everywhere, I guess, “healthy” people don’t stop to read them.

I’ve spent the last 20 years with this. I spent years on the couch, in the dark, eyes bulging, face swelling, body pounding. Trying to get out was a chore but you need to get out sometimes –heck, my home became my prison. 

It came down to showering and putting on makeup or just pulling on clothes and go. There was only so much energy to go around. I would shower and dress and my mom would pick me up. We’d head to some shops. I looked plenty, sick. That doesn’t make you feel good about yourself. I found people to be standoffish when then acromegaly features were prominent and I WAS a hot-mess. I was thankful to be out and make it into a store. More often than not, we would get to the parking lot, get out of the car, my mom would take one look at me and say “We need to go home, don’t we.” We would never make it inside.

After surgery and after adding injections 3x/day, I was a bit better. I showered, dressed and put on make up —just enough to feel pulled it together. So that means I’m and healthy? That was 10 years ago. My issues are different. I don’t look like the stereotype with acro-features (that deserves a hearty blog post but after this challenge). I have damage to nerves from bone growth. I have exhaustion, pain and adrenal insufficency. You can’t always see it but I also don’t want to wear it on my sleeve. Who wants to mope around all the time or be around someone moping all the time? But still, why does Make up = healthy. No make up = …something else.

It’s not that I don’t like the compliment “you look  good, “you look like you’re feeling better” but I despise the assumptive close “I’m so glad you’re ALL better.” These all feel false. They’re not true. I somehow feel cheated.

I will never be ALL better. I will adapt. I am always adapting. Such is life. 

I’ve become torn between identifying with my illness and not wanting to be defined by it. I don’t want to be thought of as lying, over dramatic or “milking it” but I also don’t want to look like crap. I really don’t mind living in PJs but when I go out I want to look nice, care about my appearance…my self-care is important. It’s about me and making peace with my lot in life and not totally losing myself.

So if you don’t believe me —it doesn’t change my truth. If you think poorly of me or choose not to accept me at my word —that’s OK too because it doesn’t change anything. Your opinion is not my concern. 

So go ahead, think, I’m not sick —isn’t that the point of getting dressed and putting makeup on? I miss who I was …but I’m still in here but altered… new, evolved…

It’s about how I value myself that matters.

It doesn’t hurt that my hubby tells me how beautiful or cute I am whether I’m dressed up or, more often than not, in what he refers to as “bohemian PJ layering” or “classic Kara.” One pj leg is always up or down, one slipper socks is twisted. There’s the sleep T-shirt layered with a long sweater and then I’m cold, so I put img_1469
a regular length hoodie over …it talk about layering! Comfy! 


And my dad said no man could love me looking like that (he would tease when I moved home and saw my daily get-up). Funny, he was wrong. Paul loves me and my hot mess, bohemian, layered look. He loves me with or without make up. So I don’t care what others think. 

 i_am_invis_illness

The cliché is tiring and honestly I’m tired of seeing posts about it. LOL

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