What not to say

I read something yesterday which got me to thinking about what to say and NOT to say to someone battling a chronic illness. Some examples:

  • It could be worse or at least you don’t have XYZ… – You are right.  It could be worse. And I’m so thankful I don’t have XYZ. But I do have this and it’s pretty shitty sometimes.   Instead how about saying “How are you today?” or “I’m amazed at how far you’ve come.”
  • Learn from this lesson and allow your suffering to bring you closer to God or God never gives us more than we can handle. – Never EVER say this to anyone.  As for me, I can’t quite understand why He would make me suffer in order to bring me closer to Him.  Please don’t try to “save” me.  Instead, how about a simple “I’m sorry and I’m here for you.”
  • You don’t look sick – Good!  I spend a lot of time and energy every day to ensure that I don’t. And on the days I don’t have the energy to do so, please do not point out how awful I look.  Trust me, I already know and feel crappy enough about it.  Instead, how about saying “You look great, but how are you feeling?” or a simple “Are you ok today?”
  • Everyone gets tired– You are right.  We are all walking zombies be it from work or parenthood or both, etc.  But, you have no idea what tired is until the thought of even washing your hair is more than you can handle. My tired is a deep, bone tired and no amount of napping is going to help.  Remember those adrenals?  Mine don’t work. Instead, how about a simple “Are you ok? Do you need anything?  How can I help?”
  • Just push through it – Trust me, I’m pushing my way through life some days. How about just cheering me on.
  • You’re just stressed – While stress is not good for me, it is not what caused my illness.  You saying such a thing to me MAKES me stressed.
  • I know how you feel – Unless you are suffering from the same ailment, I’m sorry but you don’t. And while I appreciate the sentiment because I know you are trying to understand, how about a simple “I am here for you. Help me to understand.”
  • You can beat this, you’ll be back to normal in no time! – I will always have this disease.  It’s manageable but not curable.  Instead, how about a simple “I’m here for you.”

People mean well.  They do.  Nobody who ever said the things above had anything but the best of intentions.  In fact, I’m sure I said at least one of those things a time or two.  Words have the power to uplift or to hurt.  Choose wisely and use your words to lift people up.  Be a good friend.  Talk to your friend or loved one and ask what this is like for them so that you understand. Don’t judge, or push and understand if they don’t want to talk about it or share.  And, on that note, please know that I don’t share these things and I didn’t create this blog for pity, sympathy or attention.  I hope that by being brutally honest about my experiences that I can inform and educate others. When I was going through the worst of my illness, I wish I’d had somebody to talk to who really understood.  Somebody who could share their knowledge and experience with me. Fortunately, I’m now on the upswing of things and hope to stay here for a very long time.  But, that doesn’t mean I don’t have difficult days. That every time I start to feel poorly I don’t panic, worrying about how bad things will be this time around. Because I do. The difference for me now is I know how to manage things.  I know what to do when I start to feel poorly. And I hope that by sharing my experiences, so will you.

And, back to those non-working adrenals.  Tomorrow I’ll share with you more about my prednisone fun and my adrenal system.  I’ll also share what I ate this week and have some new soup recipes for you. Until then, go Cubbies!!!

 

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