posted
Maybe some of you know the problem: When you feel terrible (which you do very often with lyme) how often should you tell other people about it? How often should you pretend youre fine when you are not?
My experience unfortunately is that people start to turn their back on you when you moan too often, even very nice and helpful indivuals and close family members.
So why do we generelly tend to tell others when we feel bad? I think you are instinctly doing it because you hope you are offered help. But this doesnt seem to happen with a chronic disease you have had for years. Instead you get on others nerves and become more and more isolated.
On the other hand its hard always to be an actor and smile when you feel like you are dying.
How do you guys handle this?
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I do tend to tell close family members. Other people I am much more reserved with. Generally thought I don't lie and say I feel fine unless I'm dealing with a complete or near-stranger.
With me people can probably see I'm not fine anyway since my muscles are twitching, I'm pale as a ghost, I have bags under my eyes, I can't move my hands periodically and I've dropped a ton of weight lol.
posted
I fake it. It seems to work better. Like you say you tell them very often and they turn their back on you. Even family members will.
I also know it is hard to pretend when you feel like hell but after a while it just becomes a habit. I've done it for over 40 some years.
No one not even family members understand until they walk in your shoes. If you don't beleive me just wait until one of them has this (and as fast as this is spreading they probably will before you know it) and then REAL fast they start listening and understanding.
posted
I use to have more frank conversations with my friends and family on lyme and my treatment. Initially, I think I needed to be open and vent a little.
My long term significant other used to stop me and say "can we talk about something else?".
Now I don't bring it up anymore and if I'm asked I just say "I'm still in treatment, with some improvements" and change the subject.
Lately my GF has questioned "how long will you have that thing (PICC)in your arm? I think its all in your head". I've been on IV for almost a year, diagnosed and in treament for over 2.5 years, and sick since early 2008
Such a lonely battle. I feel our time together is getting short and she should move on with a more active partner.
Sorry to vent... maybe its the Mepron blues, or that Tindimax I started last week that's kickin my butt.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
People mostly don't want to hear about it. And if it goes on too long, they get tired of it. What is so heartbreaking is not even to be asked how I am, by family members.
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