You Don’t Look Sick: Part 3

This is part three in a three-part series on frustrating lines, including explanations for their hurtfulness, better phrases to use instead, and ways for the chronically ill to retrain their brain to hear the kind intentions in all words.

You can catch up by reading Part One and Part Two here.  Now, let’s finish ….

#9 SHOULD YOU BE EATING THAT?

Those with chronic illness, particularly autoimmune disorders, will quickly discover the power of food in their path to wellness.  I am now living gluten, dairy and sugar-free, and my symptoms are much more manageable.  Is it hard to say no to homemade bread or chocolate cake?  Sure, sometimes. But most of the time, I remember how horrible it was to be unable to walk.  It was my diet and supplements that got me out of that wheelchair.  The bottom line is nothing tastes as good as healthy feels.

With that in mind, nothing is more frustrating than for a person who is the poster child for bad habits, from drinking soda all day to puffing cigarettes whenever possible, to give me suggestions on my what I should be eating.

Instead:  I’m impressed with your dedication to your diet.  What do you think has made the biggest impact on your symptoms?

This lets us know you recognize the difficulties we face with each meal, and it give us room for an important conversation.  I won’t preach my nutritional beliefs at you, but perhaps something will stick.  Regardless, we can have a healthy dialogue, which allows us to understand one another better.

#10 I WISH I COULD STAY HOME ALL THE TIME.

It would be much easier to stay home all day if we had a live-in housekeeper and cook, but we don’t.  When we are home, we hate ourselves for our inability to do what once was the simplest most mundane tasks.  We feel lazy and worthless.  We worry about the burden we are unintentionally putting on our families.  There are days when walking upstairs takes all I have in me.  I wonder how is this my life??  One day I was jogging ten miles and then next I was in the cardiac unit at the local hospital.  It is such a difficult concept for us. Please don’t belittle our situation by saying you wish you were homebound.

Instead: It must be hard to go from such an active life to one with so many limitations.

This acknowledges your understanding that we haven’t always been this way.  We don’t want to be home all day.  We miss our active lifestyle. Saying it this way give us ownership of these changes and helps silence the little voice in our heads saying lazy or wimp or worthless.

#11 GOD NEVER GIVES US MORE THAN WE CAN HANDLE.

If you’ve ever had a loved one commit suicide, you know firsthand how ridiculous that statement is.  If God had never given my cousin Mike more than he could handle, Mike wouldn’t have been buried under a 21 Gun Salute.  Life was too much for him to handle.  When his brother had to carry on without him, the weight of it all buried him as well.  God, or Someone, gave them more than they could handle.

Did you know Lyme disease has an approximate suicide rate of 34%?  And even that number is low considering Lyme is rarely ruled the cause of death –cardio blockage created by Lyme disease would still be identified as a cardio-related death.  As patients feel alone and hopeless, suicidal thoughts often overwhelm them. They’d do anything to stop the pain.

Instead: I miss you. Would you like company, or do you need to rest? Should I call you or text? What works best for you in your healing right now?

I cannot stress this enough.  We do not want to be alone.  We seek connections, but are often unable to create them on our own.  We’re too tired.  Our brains are too foggy.  We need you to take charge and take that step.  Show up at our house with a meal for our kiddos.  Ask about our diet and try to make something to accommodate it.  Text us.  Call us.  Visit us.  We may be putting on show on the outside while on the inside considering how much better off the world would be without us.

#12 YOU’RE SO SKINNY.

I’ve written about this before, but it or a version of it was one of the most shared lines in dozens of online support groups.  You’re wasting away.  Gosh, you’ve gained so much weight.  Are you pregnant?

Unless you know a person is working out and eating clean so as to improve her body, do not reference a woman’s size.  You don’t know what battle she is fighting.  Over-weight or under-weight, women are sensitive, especially when we feel like our bodies are betraying us.

Instead…. I got nothing.  Just don’t comment on weight. Period.

There were hundreds of comments.  I’ve whittled them down to the Top 12.  Some were remarkably horrid.  It’s all in your head.  Just exercise more and you’ll feel better.  You don’t deserve to have your kids anymore.   I can’t handle your sickness anymore; our marriage is over.  If you think positive, you’ll be healed.  And the list goes on and on….

If you love someone with a chronic illness, please continue loving them through this, the toughest time in their lives.  Be patient and forgiving.  Remember the littlest thing will make our day.  Try to phrase your words in a kind way.

If you are the individual with a chronic illness, pay attention to your own sensitivity levels.  Trust that the speaker means well and only wants the best for you.  Train your mind to rehear particularly sensitive lines.  Accept help.  You are worth it.

You matter.

Every.  Single.  Day.

There is purpose in chronic illness, for both the warrior and the friend of the warrior.  Seek your purpose.  There will always be goodness in the ugly if look for it.

Please keep sharing this posts so more and more people will be aware of the kind of words we need to hear.

Keep coloring, my friends.

 

 

2 thoughts on “You Don’t Look Sick: Part 3

Add yours

  1. I just found your blog a few minutes ago. This is an excellent post which I’m going to share on Twitter and have already shared on my Facebook page and on a Fibro support group page. I’m looking forward to reading earlier posts once I can see better.
    You and I don’t have the same chronic illnesses but, your post hit home. I think the vast majority of those of us who are chronically ill (particularly with invisible ailments) have heard insensitive or flat-out stupid comments and suggestions. I like your alternative comments. It’s great to give well people things to say that would be helpful to us.
    I wish you the very best and many more good days than bad.

    Like

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