Show me a smile then
Don’t be unhappy
Can’t remember when
I last saw you laughing
If this world makes you crazy
And you’ve taken all you can bear
You call me up
Because you know I’ll be there

And I’ll see your true colors
Shining through
I see your true colors
And that’s why I love you
So don’t be afraid to let them show
Your true colors
True colors are beautiful

Like a rainbow

-Cyndi Lauper

I’ve had a tough year. There was my surprise open heart surgery that was only partially successful, months of healing and then a stroke during a cardiac cath. I like to say I was “lucky” with both since I am still here to write this. They did the surgery before I had an actual heart attack and the stroke only affected by vision and balance. Strokes to the brain stem can be devastating. My vision is improving and I am working hard in rehab. It’s all good, right?

People expect me to be all grateful all the time. Usually I can put my grateful face on and get through the day but there is something that is really bugging me. I usually don’t talk about my situation. I live it all day and have no desire to make you hear about it too. Often people ask how things are but somehow I end up feeling you don’t really want to know. You want to hear, I getting better all the time and things are great. It’s a trap I fall into all the time. Then I end up feeling frustrated, guilty and overwhelmed.

What NOT to say to someone struggling with health or life.

  1. Just remember there are people much more sick than you are. I know of a person that…. (fill in some terrible story here).

God, I hate this one. I know you are trying to help but not only does this not help, it makes me feel worse. I know there are people in this world that suffer terribly but their pain does not lessen mine. It makes me feel guilty for admitting that I have pain or for having a extra bad day. It tells me to keep my pain to myself. It tells me that you don’t want to really hear what is going on. Knowing there is such suffering in the world does not cheer me up. Please don’t say this to someone struggling. It’s the worst.

  1. Maybe you should find another doctor. My aunt saw a great doctor in (some far away place) and now they are completely cured! I don’t know their name or specialty but he was amazing. You should call her.

     Again, I know you are trying to help but this is not a help. Now I feel like if I really want to get better I need to call your aunt. It turns out that your aunt had a tummy problem and has no idea why I am calling. I’ve seem so many doctors. I’ll probably see more. Thanks but no thanks.

  1. Have you tried Tumeric, bitter cherries, Flax seed, food elimination regimens, going gluten free, blah blah blah?

I am pretty open minded and have tried all kinds of therapies. If there aren’t serious side effects or drug interactions (there usually are) I usually give alternative therapies a try. If one of these therapies actually worked no one would have coronary artery disease, rheumatoid disease or have a stroke. Thanks but been there, done that.

  1. Maybe you just need to loose weight.

Rheumatoid disease is not caused by obesity. Some of the thinnest people I know have Rheumatoid. It is not a risk factor for autoimmune diseases. Of course weight loss is always a help for better health. (I’m working on it)

All these reactions have one thing in common. They shift the cause of your condition from –Life has dealt me some tough cards- to – You brought this on yourself. I think people find comfort in blaming the patient for the disease/condition. We don’t do it to be mean, we do it to feel safe. Telling ourselves that other people get sick because they did this or didn’t do that makes us feel safe from getting it too. It comforts us and judges the patient.

When someone in your life is sick or in pain, this is what they need.

  1. Listen.

Ask. Then shut up. Let them feel heard. Listen with an open heart. Imagine being in my shoes. Don’t listen to reply. Listen to feel my pain. Pat my arm and say  things like – This must be really hard. Or  How is it today?  Being heard, really heard is huge. It is comforting and even healing.

  1. No words. Just hugs.

You can’t make me better. I can’t make me better. Hugs help. Long hugs, like you are being held really help. Serotonin releases. I feel just a tiny bit better. Maybe a whisper in my ear. Karri, you can do this.

  1. Let me cry.

I cry a lot. If I cry with you it means I love you and can be vulnerable with you. People usually panic when they see tears. They will do almost anything to try to stop them. Please don’t cry, it’ll be OK. …..Wrong. When I cry, lean in for a hug. Say things like, Go ahead, cry it out. I’ve got you. Or just stay close and be there while I cry. That’s a big help.

There are no magic words that you need to recite when someone dies or is sick.  Just be there. Let them share what’s really going on and how it makes them feel. Let them show you their heart and their pain. It isn’t easy but it can be a wonderful gift for you both. The most powerful moments have very few words.

 

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