“K” is for Keeping Up Appearances

 {forgive me if this one doesn’t make sense…you may be able to tell that my meds kicked in…lol}

Sometimes

We’ve all been there right?! Someone asks us how we’re feeling & without pause we say, “I’m doing good”, or ,”I’m ok” & then follow up with our own “How are you?” that is met with the same response. Because no one really wants the truth. It’s a question that you ask for the appearance of asking. It’s about being polite. And we all know that, and we all do it.

But when you live with an invisible, chronic disease…being asked that question is like walking through a mine field. I know I’m not ok, I know I’m not doing good. You know I’m not ok, but still you ask because, again, it’s what we do in a polite society. But do I answer with the truth and risk stepping on the mine that activates your ability to not be embarrassed in the slightest as you hide in the adult diaper area of Wal-Mart pretending that you don’t see me or do I lie & allow us both to pay lip service to one another?

I love being able to  make people laugh. I love that a lot of my stories start off with, “Yeah…I got banned from there”. I love that my friends can turn to me to help cheer them up.

Prince Charming tells me all the time that he can’t believe how well I handle being sick, that I can smile so much on the days that are so bad. And I’d like to believe that I am a very optimistic, positive person.  That more times than not, the glass is half full.

But sometimes it’s all a mask. One that I wear for several different reasons. For one, no one wants to be brought down by someone else’s negative energy. Two, if I take the mask off my loved ones, PJ more specifically, worry about me & I really don’t like when people worry about me. And for three, to lie to myself.

It’s easier to pretend that I’m ok than to think about waking every morning knowing that I am going to have pain. To be scared that every time I throw up I could start a chain reaction that can end with a week long stay in the hospital. To know that because of Lupus I might not ever be a mommy to anything other than my angels & fur babies. To contemplate a need for a nursing home before the age of 50.  To worry that I’ll never be able to walk without the aid of a walker ever again.

I’ve been told by a lot of people that they feel helpless because they don’t think they can do anything for me. And I tell them that the best thing they can do for me is call out bullshit when I say I’m ok, but they can tell that I’m not. Let me know that you want to be a soft place for me land and not worry about you disappearing. Tell me it’s ok that we don’t have to talk, that you literally will be a shoulder to cry on if I think that will help. And don’t be afraid to tell me when you can be that & when you can’t. I would rather know that I’ve been a downer for an extended period of time than to know I sent our friendship packing. That is the best thing someone could do for a loved who lives with a chronic disease.

masks

What do you think the best thing a non-sickie can do for a sickie?

Today’s post brought to you by the letter:

Day "K"

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12 responses to ““K” is for Keeping Up Appearances

  1. As you put it, “a nonsickie” can just be there for the “sickie” no need to sugar coat, no need to lie or pretend. Be with that person the way you were before they were sick; or before they got worse. Doesn’t matter just be real. Laugh with them, cry with them, just sit there. Don;t show them pity because that probably would only make things worse. Really that is what I feel I would do for a friend who was sick or what I would want a friend to do for me if I was sick.

    • You hit the nail on the head with the pity. It’s really hard to see that in someone’s eyes for you.

      And it’s ok to say that you don’t understand, I’m living with it and don’t understand it. And don’t feel like you need to talk to someone but feel like my plate is so full that you don’t want to anything to it. I need to know when you’re having a bad day & need a shoulder just as much as you need the shoulder.

  2. I too have low days due to pnd and lie and say im ok when im not- its that mask and not wanting others to get dragged down or worry. I rather them get the truth out of me so can talk about it as i know ive been their for them- big hugs hun and well done for writing it down – that itself is hard to do x

    • I’m with you…I can’t change something or try change something unless someone is honest with me about needing the change. But I have to be honest with myself too.

      Thank you. I went back and forth on whether I was going to do this one, but I am glad I stuck with it. ❤

  3. I hear you loud and clear. And not because I have a chronic health problem but because I am so totally immersed in the health of my husband. I wear a mask too. I don’t want anyone to think I am not in total control. I want everyone to think I am handling it. I WILL BE HERE FOR YOU MONIQUE! Anytime you want to vent, moan, groan, cry shout, or just be sad write to me. I won’t try to talk you out of it. I will listen! You have a full plate and that plate is sometimes hard to carry all by yourself.

  4. I wish you more good days to come. If it is lupus you mean, my mom had the type that did not affect her organs. She had a lot of days she just felt like riding the couch.

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