irrational minds and what not to say to me.

I have mixed emotions on looking good and healthy and being told that.(insert don't feel guilty if you have done this here) when you have never had an illness like this you don't even realize that what you are saying and more so how we take your words. I'm just going to say it. I HATE WHEN PEOPLE TELL ME I LOOK GOOD it is only acceptable to me if ITS FOLLOWED BY I KNOW YOU DON'T FEEL AS GOOD AS YOU LOOK BUT IT"S NICE TO SEE YOU. You are not doing anything wrong but I am sensitive. It's me, not you. Your words are full of love, I know,  but when you are in this spot it doesn't feel like it. This will not sound rational..  cause it isn't rational but it's still a feeling. I have to admit if you haven't picked up on it yet that I am defensive in my writings. Let me just explain why really quick.

1. having someone say you look good even in love it will put a dagger through you because in reality you feel emaciated and on death's door step.
2. A disease that is all internal just makes you feel like you are being questioned all the time about it and  since people can't see it you feel the need to defend what you are going through internally and get it through to them that you are not ok and you don't feel healthy or perky or good by any stretch of the imagination.
3. I want vindication and when I am seen looking good it feels like that goes away. I feel like just because someone saw me not in bed, they automatically are pretty much saying there is nothing wrong with you. Since you can't see the internal chaos and I managed to leave my bed but feel horrible; it's similar to having doctors tell you that your REAL physical pain is all in your head, you made it up, you are crazy. and we don't treat crazy. It makes me feel like because I left my bed people will not take my disease seriously and will question and doubt if it is real and will think I am on the straight shot to recovery when I know that after my outing I will feel like complete death, while those who saw me think my day is fantastic. I realize how irrational this is but it's important for you to know.

 On one hand I mean at least I don't look like death all the time fortunately.  (thank you schnucks lady who approached asking if I need an ambulance while I stood with the cart AND I actually tamed my hair and was wearing make up for once. How nice of you to ruin my entire day, thanks.) Also, who does that?! I mean I am used to people staring at me because of my cane, port, walker, wheelchair, and the disgusted faces of those who see us pull into a handicapped parking space. For real the judgment is in the air. I imagine they are forming my entire life and all the possible reasons why I look like that. off one glance cause that's people do. I have adjusted to that.


My whole point is what am I supposed to look like? There is a disaster going on inside while I smile, say I'm okay when asked, say I don't need things when I actually do, hide the tears, hide my broken heart, hide my broken body, hide my bruises and hide feeding tubes and ports thus making myself look so much better than I feel. Just wait till I unhide tubes and then we shall see your real thoughts. For those that know me, please don't say it at all or rephrase it like I have above and it will be fine. Totally irrational but don't try to fix it for me, I am aware of how ridiculous I sound but I just have stuff to work on and this is one, bear with me here.