You Don’t Look Sick

 

"You look fine to me."

"You don't look sick."

"What's wrong with you this time."

Any of those sound familiar? If they do then you probably live with one of the many invisible illnesses that so many of us do. For me personally it's Fibromyalgia.

Living with Fibromyalgia every single day of my life, it has become routine for me to hear phrases like this from the people I meet, friends who know me, and even doctors. People simply do not understand. If they can't see it, test for it, or quantify it on some level than they just don't believe you.

I've heard comments said to others who live will illness like this, or said about them. I have a friend who has a friend with a neighbor who walks with a walker on some days and on others they don't need. This friend of a friend has commented how this neighbor couldn't be that sick if they don't need it some days. I wish they'd think the opposite. I wish they'd comment how nice it was to see this person not need it today.

I've lived in campgrounds where people have found out that I am disabled. On my good days I like to take walks. I've had people make the same kind of comments as those at the beginning of this writing. I've had people challenge me to explain why I am disabled. For a long time I really used to think I had to understand this illnesses every nuisance and do just that. I used to try. Now I mostly just say that I have several illnesses that I'd rather not talk about. It's just easier.

What most people don't think about is how they would feel if they had to live every day of their lives with an illness like this. We too desire to do things. We want to enjoy the outdoors. We HATE the days that we cannot walk without assistance. We DESPISE the days that illness keeps us from being able to get out of bed. We ABHORE the moments when we have to go in public while we are feeling ill. And those precious times when we are able to live for just a little while like someone without disease lives are golden for us. They are treasured moments that we get very few of. Even then we are often dreading the days that will follow our outing, as we know this will surely put us in a bad place for days to come. Even then we are often fighting against pain and sickness, but we continue forward out of stubborn desire to LIVE.

Sometimes I can go months without too many issues. I have my typical daily pains. I try to keep myself limited on activity so that I don't put myself in a bad place. Most times it is possible, as long as I remain aware of my own capabilities and do not try to surpass them, to live relatively normal or without too much issue.

But then there are times, like now, when I go through what they call a Fibro flare up. What it means is regardless of how much I have or haven't done, my body is suddenly thrown into a mass amount of pain coming from multiple areas at once. This can also include flu like symptoms of nausea, aches, and fatigue. This can also, as it does this time, include new symptoms I have not experienced before; in this case sharp abdominal pains, spasms in my shoulder blades, and MASSIVE migraines.

During these flare ups life becomes a place I don't want to be. I wonder why sometimes I am allowed to continue living in this much pain. I joke with others about how if I was a horse someone would just shoot me.

During these times there is no comfort. There is no way to lay or sit or stand that does not cause me excruciating pain. During these times, there is also no way to just stop living. I have to continue to do the shopping. I still need to get food to eat. I still have to take my dog out. I don't have a choice. And sadly these flare ups can last months or even years.

Personally I don't want to go out into public and cry the whole time I am shopping. I don't want to walk around with a bad attitude and be rude to people. I don't want to snap and be mean to others. So I suck it up and I do what I have to with a smile on my face.

To someone who doesn't live with me, I probably don't look all that sick. I'm sure people see me in the drivable buggy at the supermarket and wonder what a 90 pound woman is doing in one of them. I'm sure some people think I'm being foolish or lazy.

It's sad and unfortunate that some people judge others on nothing more than the moments they see. It would behoove us all to remember that none of us can see inside someone's life unless they invite us to. None of us know what another lives with unless they share it and even then only to an extent.

As someone who lives every moment of my life being very aware of what I can and cannot do, what might make me sick or hurt, of every pain in my body, I can tell you that I would not wish Fibromyalgia on anyone for any reason, but there are times that I wish someone could live for just one week with what I live with every day of my life. Maybe then they wouldn't be so quick to judge others. Maybe it would provide some perspective.