Monday, September 8, 2014

The Pitfalls of Living With an Invisible Illness

I keep saying, I wish people wouldn't judge me or that they could understand just how hard every little thing is for me. That's not very realistic though, is it?

If only my skin could change color to reflect the severity of my various symptoms so they could watch as the longer I am exposed to various triggers and exacerbating factors the worse I feel, then they would know. They would see it. They would believe me. Let's face it, that's not very realistic either.

The very nature of an invisible illness is that it can't be seen and perhaps it's human nature to struggle to believe in something invisible.

On a day when I'm not feeling terrible, with some effort I can pull myself together enough to look and sound normal for a short period of time. By the way, these are the only circumstances under which I leave the house therefore the only circumstances when others see me. When people then ask how I'm doing and I respond by explaining that my symptoms are still out of control, etc. The vast majority of the time the response is still something along the lines of - well you look good.

Yep. There is nothing I can do or say to convince people that I'm telling the truth. Likewise, I can't ever really know for sure how many people in my life actually believe that my chronic migraines and fibromyalgia are debilitating. Maybe if I never covered up the dark circles around my eyes, or left the house wearing anything other than the comfy clothes that have become my chronic pain uniform, then my story might be more believable. Since I have no desire to deprive myself of the tremendous emotional and mental boost I get from pulling myself together, going out into the world and interacting with others when I can, I don't see that happening any time soon.

Just because I'm smiling, laughing and talking doesn't mean I'm not in pain. I'm just putting on a show so that we can all have a pleasant time. I need that. I need to have moments when I'm doing something kinda normal and fun. Nobody sees all the preparations I had to do in advance, or how much effort it takes manage what my body is doing to me during, or the worsening of my symptoms after and the recovery time I will need.

Honestly, I don't want them to see that. But I do want them to know it happens. Does that make sense to anyone out there?

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