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Writer's pictureSue Skavlem

How Do You Feel & What Do You Do?

November 2024


QuestionMarks

Asking Questions To Learn

Because I'm nosy (see curious), I find that asking questions is one of my favorite ways to both learn AND teach. I asked a question every week last month for people who follow us on social media, and I think you'll find the responses thought-provoking.

(And maybe you have something to add!)




How Do You Feel?

How Do You Feel About Yourself When You're Sick?

This is such a good one.


Although we may not be able to relate to their daily struggle, we can start to understand or relate by acknowledging our own struggle with self-worth while we're sick.


I posted this to help people like us understand the mental load of never getting better. It's frustrating. And it can lead to depression.

Here are some of the best responses from those with or without chronic illnesses:

"I get so frustrated and angry every time things act up."

"Frustrated I can't do everything I want. Angry at what is being taken from me. Exhausted by trying to always use more spoons [than] I have." "Even if it's just a cold [now] it lasts so much longer and I miss so much more [than] I used to."

"Bummed out!"

"I get pretty bad migraines and I get frustrated when I'm out of commission for the day."




What Do You Do For A Living?

Many People With A Chronic Illness (Like hATTR) Can't Work. What Can You Ask Them At A Party Other Than "What Do You Do For A Living?"

We had awesome responses to this with vv creative answers.

Here are some of my favorites below. (please feel free to comment below and add more!)


Here are some of the best responses:

"If you could invent a holiday - what would it be and how would you celebrate it?"

"What [is] something that you [choose] to spend your time on?"

"Are you reading anything good right now?" "What podcasts are you listening to and why?" "Do you like to binge-watch shows and do you have any you'd recommend?" "Who shot first - Han or Greedo?" "Which Hogwarts house are you?"

"What fills your cup?" "What are your hobbies?"

"What's your enneagram number?"

"What's the latest book, podcast, movie, TV show (etc) you've been taking in and what do you find interesting about it?" "What skill haven't you learned yet, but it on your list to try/find out more about?" "What brings you joy?"




I hope you had as much fun reading these answers as I did.

I look forward to posting more questions and answers. Anytime we can learn from each other - and stay curious, we build up our empathy muscles and grow stronger friendships and community.



Keep Asking Questions

♥ Sue



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Living with hATTR

There is no current cure for Amyloidosis. YET. But in the last 9 years, there are significant advancements in NEW medications that can slow the disease down, and change the story.


We believe that living with hATTR = living with hope.

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ABOUT THE AUTHOR

Sue Skavlem

My name is Sue Skavlem.


I'm a visual messenger – not a doctor.*


My husband has Amyloidosis. And it took me a year of googling to understand what an "adult-onset multi-system genetic disease" was.


After learning that "Amyloids have the tensile strength of steel", I came up with the "Accumulating BBs Theory."


My hope is to promote awareness of the disease, update our friends & family on our journey, and create resources other families with hATTR can use.



*Information in this article is meant to inform, but is not medically reviewed, nor should it be used to self-diagnose. Please talk with a medical doctor about free genetic testing if you or a loved one may have hereditary Amyloidosis.

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