How do you deal with "normal","healthy" people?

I use quotes because we all know those terms are relative :)

Anyway, I'm having some trouble dealing with the people in my life who are lucky enough to not be chronically ill. My friends are tired of me "ditching" them at the last minute, which has only happened on a couple occasions when I've had to spend my limited physical, emotional, etc. resources elsewhere. They knew what I went through prior to surgery, visited me in the hospital and have seen me struggle for the 7 months since, so I don't really know how to address this. I feel like it's very much a "duh" situation. Same with my boyfriend. He's been pretty great through this whole ordeal but the other day he told me that he's envious of my unlimited free time. He clearly doesn't understand that it still takes me three times longer than a normal human to do most tasks, like keeping the house in some semblance of order, though he watches me struggle on a daily basis.

So... help?

I second the Spoon Theory suggestion. Prior to my surgery, during recovery and now as I'm dealing with new chronic pain issues, this has been the most effective way I can get someone to understand what it's like to have a daily battle with your own body. At first I shared it with a couple of really close friends that specifically asked me what it was like to feel like this. Eventually I just posted the whole thing on facebook. While I had some difficulty sharing that with everyone on there, I figured that my friends and family that might feel hurt or upset could use it, and other acquaintances of mine most likely know someone else going through something similar.

That being said, there are some people who simply will not get it. For example, it has caused a lot of tension with some members of my husband's family. Despite knowing that I'm not well, and despite all of my attempts to explain it, they simply have no empathy for the situation and continue to hold the times that I've "let them down" over my head. My husband and I had to come to an agreement to adjust the way we interact with those members of his family. This has really eased the emotion toll on me.

Sometimes you have to make a self-preserving decision to do your best to help them understand. And if they don't hold up their end as friends or family, you have to adjust your expectations of your relationship with them. That doesn't mean you have to cut them off completely, but you need to be real with yourself about who is really trying to support you.

I have come up against some of these issues with my husband. I have found that aside from explaining how I feel, I have to grant him some patients. There is no way he could understand how it feels to not have the physical resources to keep the house clean, or what it’s like to be in pain all of the time. For me, it’s been about adjusting my expectations of my husband a bit. When I get some anger or resistance from my husband I have make the decision to let it roll off, because he is frustrated too, his life is affected too, and as much as I try to explain myself to him there are going to be times when he can’t be understanding. My husband was pretty jealous that I was home for two months post op, because he was imagining all of the fun things he could do. As selfish as that sounds, it’s just human nature. A person can intellectualize a situation, but emotions are a totally different ball game. I have to remind myself how different I am now, compared to pre-chiari, and how much adjusting he has had to go through too.

Thank you so much for bringing up this topic, Teresa. I am learning not to replay the hurt dished out by people who are not able to understand or respond to me as a person with a fairly limiting illness. I am making an effort to save myself for me and to keep myself in good emotional shape for those wonderful people who “get it”. Looking forward to watching spoon you tube. Thanks, Sonj

Abby thank you so much for sharing that with all of us, i felt so related to that while i was reading and also because as much as i feel sick sometimes i just put on my pocker face and try to do my best with my friends and family. Sometimes i feel so frustrated because i am 21 years old and i can´t do most of the things that my friends do, i cant stay out late, go for a ride in the roller coaster, or even stay in the same positiion while i watch a movie because the neck pain is huge.

i always think about how is gonna be my future, having kids or even if i may have a natural birth when i get pregnant because of the pushing and all of that. For now im living with my parents but then i will have to do all kinds of things around my house and as theresa says, sometimes i can´t even wash the dishes withour feeling some kind of pain...

And i agree with all of you, you just have to try to explain it to them, to your boyfriend, friends and family because they might have an idea but the only one who knows how it feels it´s you!! cheer up and keep on going every day teresa !