Nymph Tick

Nymph Tick

Thursday, March 4, 2010

The mask is coming off!

Some may be wondering what is up with my recent status updates on facebook. Or some just maybe don't care and are rolling their eyes at me or just simply not reading what I say...(Below are the status's that I am talking about)

1st one.. "Just wants to say to anyone who thinks we are faking being sick or our illness isn't serious or who rolls their eyes when I post info about lyme...feel free to come over on a day like today when my child can't walk down the steps due to leg weakness and pain..and while you are at it stick around to take care of him cause I can't go up & down the steps myself!"

2nd one.. "has learned that when you have a chronic illness that many people don't know much about they tend to run the other direction...people who I barely know or haven't talk to since high school have helped me more then some of my own family...wow what you find out when this happens to your family...interesting!!"

Comment from Kathy.. "Can I repost this on my profile... gee. I have had a small heard of people gradually vanish from my life since Lyme hit our family. Almost no one calls to check in, no one comes to help and then a few add injury to insult and question if I have actually been sick and wonder if I have been making it up. Yeah, you learn a lot about people thru trials like this"

My reply.. "Kathy, this is what we are going through too. Some family not believing us either. Or some not thinking it's that bad. Well most don't know what goes on behind our closed doors because they simply don't ask. So I just pretend all is peachy when I see them. Oh how I enjoy that! Not! Some never even said one word to me about it since I told them. It bothers me a lot but I don't say anything. Well I am tired of putting my fake face on and going to parties..."


I actually had about 20 to 30 replied comments on each of these. Probably because I have several hundred friends that also have lyme disease. So if we are faking it then I guess they are too?? Hmmm..that's interesting!

It is sad to me that so many people are sick and I hear over and over again that their family and friends have abandon them or don't believe them or treat them badly or just plain ignore them as if they are crazy! Oddly enough I have never heard of a person who had cancer say that this has happened to them! If this isn't true then please do share with me...

Since I have found out my boys, my mom and I have lyme disease over a year ago it has been shocking that some of our family has abandon us, doesn't believe us, or just ignores us and acts like nothing is wrong. I guess you really learn who people are when this happens to you!

I have tried to put on my happy face when I go to events and parties...But inside I am hurt and very angry and I try not to show it. Well lately it is getting to me and I can not hold it in any longer. I have decided that I need to get it out and what people do with it is not my problem. If people never speak to me again I just can't care anymore!

I can understand that people don't really know anything about lyme disease so maybe for them it is awkward to talk to me about it or to know the seriousness that we are going through. Unlike cancer because if you say to someone that you have cancer they look at you like you are about to die. But I have tried to reach out to people. I have tried to send them information and links to my blogs for over a year. I never get any responses so I just stopped doing it.

Do I expect people to understand what I am going through...NO

Do I expect people to learn everything under the sun about my disease...NO

What I do expect from family and friends is some ACKNOWLEDGEMENT, belief, kindness and compassion! I mean if you were sick I can tell you I'd be the 1st one saying "Hey I read what you sent me and I am very sorry to hear you are going through this! I hope everything will be ok and if you need anything let me know."

IS THAT REALLY SO HARD PEOPLE??? What ever happened to empathy in this world?? I guess I just can't understand because I am so not like that!!

You can't know the feeling that someone with an invisible chronic illness that noone understands has when they have to be around people who have never acknowledged their illness...it is unexplainably uncomfortable! All I can do is smile and make small talk and hope I can make it through the event without having any major symptoms. It feels like an elephant is in the room and noone has noticed it!

So if it seems as if I walk around with a chip on my shoulder now you know why!

3 comments:

  1. Ugh, Lyme is such a horrible disease. Not only do you lose your self you lose your friends. I hear you about strangers or people you weren't close to helping more than the people you thought you were close to. I have lost several friends through my journey with Lyme. I just don't understand how others can't be caring and supportive. I know I have always been supportive when any of my friends were hurt or sick even if I didn't agree or whatever.

    I am sorry your family is going through this. Take care and get well. I too have a lyme blog www.mylymediary.blogspot.com

    I am glad I foudn your blog and I hope you don't mind that I added you to my blog roll on my blog, if you do just let me know and I will take it off.

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  2. I agree Lyme and Co is horrible. So sorry for all you and your family is dealing with.

    Our daughter was diagnosed almost two years ago, and has been on proper treatment since 6/09.

    One symptom that we feel is Lyme related is the urine frequency, it has improved a little with treatment, but not completely better.

    Like your son, our daughter had horrible urine frequency and urgency, the urgency is better, but we still battle the frequency.

    Thanks for blogging, it helps to know we are not alone. Praying for better health for you and your sons. Janie

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