Sunday, April 28, 2013

Head On


Rant warning.

I hate those Facebook posts that are vague, but dripping with hurt caused by another. A friend and I recently discussed this over brunch. How many people really, I mean, really, actually care that you have been jilted by a new or old lover or friend? Probably the people who you should be calling to help you through the pain. The public post is for attention. A negative attention. A plea for pity. Or a jab at the individual who caused said pain. The following is a request for anything but. This blog is to show the path that someone with similar infections might endure. It is to help people understand that they are not alone in their suffering. To show family members that the one they love is not alone. To those who use this blog as a source of gossip, shame on you. 

In Lyme land, many have formed a community with other sick people and claim that the outside, well people just can't understand, so some have stopped trying to explain, illustrate, and discuss the realities of this disease. I have un-friended many who stopped asking to my face and accusing behind my back. I mourned the loss of many I called friends. I have moved on from that loss, but there is still a problem to be addressed. I know it is common for chronically ill persons, which is partially why I write this today. 

As this is a blog and unlike Facebook, is meant to be public, I invite those who distrust my illness and who's accusations have been kept behind my back to talk to me. I don't mean that I want to have a nasty little fight over grammar in the comment section. I mean call me. Come to my house. See me sick. See me tremor. Tell me to my face that this is a "choice" to get my way, to "get" a boy, to whatever else you have decided I want without speaking to me.

If your ears are burning, you are likely guilty. Maybe not to harming me personally, but by choosing gossip over discussion with the person/source/center of said action. People with invisible illness are forced to deal with this constantly. "Friends" who suddenly disappear from our immediate worlds, only to surface and cause drama a degree away. 

My "way" is not to suffer daily. My "way" is to choose where my life goes, not to fight to hold on to it daily. I am an artist. My "way" is to work. Hard. I love my work. To accuse me of anything else is to deny my identity. So man up. Put on you big girl panties. Stop the childish gossip. Deal with reality. Do not crucify someone who cares enough to help. Doing so denies them respect for their choices and values and this is not an action an adult takes. 

Now, I know that posting this will likely draw some reaction such as, "Well, why doesn't she just come to us?"  Well, aside from the fact that in mourning the loss of a false friendship, I deleted contact info and un-friended those people who I felt were destructive and counterproductive to my healing, this post is not for or to one particular person. (Though, if you think I wrote this to you, PM me if you like.) Many who deal with Lyme feel alienated by friends people who only care conditionally. I want them to see that, sadly, this is normal. Many people can't process how bad this disease truly is. Before you leave a friend or family member or partner who is sick, whether or not you believe them, be an adult and talk to them. Open your eyes. Let them feel safe enough to let you see the symptoms. Some of us can hide them for varying amounts of time. Which, I will admit, is confusing. We can pretend to be normal for a bit, but when the symptoms overcome our will, they are worse for doing so. I mean, higher pain, more severe jerking, higher anxiety. 

If you are to scared to have this conversation, fine. That is ok. Fear is normal. Gossip is juvenile. Choose to grow up, not for me, for your own sake. Watch "Under Our Skin". I will gladly let anyone ask any question you have about my daily fights. For example, it just took me 2 hours to figure out that I need to eat dinner (with a text reminder) and now the idea of physically swallowing food and pills seems a task insurmountable. It is highly probable that my dinner will be liquid again tonight. Leaving me with mostly liquid diet again for the day. 

Know this: Lyme will not win. People will not bring me down.I will not let people cause me to doubt myself. I will continue to grow. I will face life and Lyme and pain head on. When I am done with this war, with the help from as many are willing to give it, I will kick life's ass. And enjoying that life with those friends will be sweeter than anything. I will be what I dream of every day while I am stuck in bed. With every pill I choke down and keep down is another skirmish won. 

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