Things I love, and hate, hearing

“I don’t know how you do it”

I keep hearing this statement lately, and while I really do appreciate it, it tends to stir up frustrations. It feels so good to have other people recognize how hard things are for me and how much I do in spite of that. The problem is that I have no idea how I do it most days either, and when I’m really struggling like I have been lately it just kind of sucks to be reminded of that fact.

“Why don’t you go on disability?”

This is nice to hear because I feel like it is acknowledging the fact that I am very sick and struggling to keep up with life; but it sucks to hear too because it’s just not that easy. First of all, most people have no idea how difficult it is to get disability because they’ve never had to worry about it. Second, something about applying for disability feels like giving in to me, and I don’t give in. Also, I am not the type of person to just stop, I don’t know how to just not do things. No matter how sick I’ve been I’ve always made it to work, paid my bills, taken care of what I needed to (even if it was only the bare essentials), and no matter how badly I want to stop doing all of that…I don’t know how.

“But you’re so young!”

Again, this feels like you’re acknowledging that things suck for me…but really, I’m not too young, no one is ever too young. Five year olds get cancer, 19 year olds have massive heart attacks, newborns are born with heart defects; bad things can happen to anyone at any time, and they don’t ever stop to ask your age before they happen. Life just sucks like that. If you’re lucky enough to have never experienced a situation that you’re “too young” for, then count your blessings. So please, don’t say this to me…every time someone does I have no idea how to respond, “uhm, thanks?” Being young doesn’t change the fact that it DID happen to me, that it IS happening to me every single day, and when I hear this all I can think about is how there are so many people younger and sicker than I am.

“You need to live your life”
“Stop focusing on being sick all the time”
“Why don’t you ever just do what other people your age do?”

I heard all of these recently from someone very dear to me, who I know meant really well, but I still got mad. These are nice to hear because (most of the time) I know there are really good intentions behind them; these usually come from older family members or friends who are concerned that I am missing out on life and experiences I will regret not having some day. The problem is that I am living my life, as best I can anyways. I DO see my friends, when I feel up to it; i DONT focus on being sick all the time, just as much time as it takes to take care of myself and hopefully get better; and I AM living my life, this is it.
You don’t think that given the choice I wouldn’t rather be out having fun, having a career, having hobbies, being “normal”?! I am painfully aware of all the things I cannot do, please do not remind me of them.

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Filed under Chronic Illness, Uncategorized

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