You Don’t Look Sick

Has this been said to you? Those of us chronically ill or injured have probably been given this all too common line, “You don’t look sick.” Or how about this one, “Well, you look good!”*

If we look sick, we are sick, if we don’t look sick we aren’t. Right? No!

Most people have five senses; taste, touch, see, smell, and hear. Now, we can mistakenly use our sense of sight to judge someone’s sense of touch.

An injured brain can not be seen. The brain is enclosed by the skull and a protective water layer called dura matter (both of which are damaged on me). Injured brains are felt.

Fatigue can not be seen, it’s felt.

We can’t judge a person’s sense of feeling based on our sense of sight.

This is why invisible illness is so misjudged ending up with the ill feeling very much alone.

I met a lady in my brain injury group whose teenage son suffered a severe traumatic brain injury after being struck by a car and then run over by a second car which dragged his body underneath it before stopping. When she arrived at the hospital she told me he looked to her like an alien. His brain was actually visible and he was so beyond recognition, she could only identify him based on the fact that he bit his nails which was the only recogizable part of him. This is probably the worst case of TBI I have ever heard of, and by some miracle, her son survived his brain injury but with many many deficits.

Yet, this is not the norm. TBI is typically an invisible malady. It effects all of life in so many various aspects most of which go unseen to onlookers. TBI is felt. Chronic fatigue is felt. Autoimmune diseases are felt.

We want to be well. We don’t want to wake up every day wondering what we have to do to just barely get by. We don’t want to tell our best friend we can’t receive her visit because we are too weak. We hate missing church. We want to get up, feet hit the ground running and get everything done while having strength and energy to play with our kids and make chocolate cake for dessert.

Not all ilnesses are visible, rather, they are hidden inside the intricate workings of our very fragile bodies that can easily become disfunctional living in this fallen world. While we may not look sick, believe me when I say we are bravely fighting every day and never, ever giving up….. and are courageously smiling and enduring through the pain.

Much love,

Viv 😍

*This post was written a long time ago. I’m no longer frustrated over the way people respond to invisible illness, but I still feel this post holds a few valuable insights worth sharing with others. ~Viv

Just Say No

One thing I’ve recently learned is that the word “no” is a complete sentence. For some reason in our culture, we feel led to giving others long, drawn out speeches as to why we can’t participate, do something, go somewhere, etc. Our embarrassment over having to decline someone by saying no is underscored by giving immediate excuses highlighted and given in a long speech. We feel like we have to explain. In this sense, our lives become plundered by questions, raised eyebrows, and an overall sense of feeling like we are in the defense zone. We feel bad for saying no. We feel guilty for saying no. We feel embarrassed for saying no.

I know I do.

My mentor recently told me, “no” is a complete sentence. It’s okay to simply say no.

Living with chronic illness or injury requires extra effort to keep up. We wear out easy, things are harder, take longer, and leave us wiped out.

If I push myself or allow others to push me, my brain injury pushes back harder! I have learned out of necessity I need to say no. It’s not a preference, at times it’s a requirement.

If you don’t feel up to going, or up to doing what others ask…….simply say no. If you’ve had your personal space, or your boundary lines crossed, just say no. If it’s against your beliefs or makes you uncomfortable, just say no. Or maybe if you’re like me and you just have nothing left to give, just say no.

We are not obligated to constantly feel like we need to explain. The minute we start giving out reasons as to why we say no, it’s giving others a chance at convincing us to say yes. They will try to overthrow our no, by undermining our reasons and then we feel pressured to change and give in.

Yes, there are times when it’s necessary to give an explanation and in those cases, the person you may need to say no to may need to understand for important reasons. That’s when we must be ready to give our reason(s) tactfully and not allow them to make us feel badly for declining their request.

If we feel like it’s not respectful to simply and tactfully say no……let me ask you this; will others respect your no or try to turn it into their yes? Will a long drawn out explanation with roman numerals and subpoints A and B be respected? If not…..then your no is not being respected and quite possibly neither are you.

Photo taken by my mentor

Much love,

Viv

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Vivian Joy

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