You Don’t Look Sick: Part 1

We all have certain lines or phrases that rattle us.

I cringe when someone prefaces with “I’m just saying…” or “No offense, but…”  To me, those words are signals, immediate clues warning me that whatever the speaker is about to say, he or she knows I will probably not agree with it.

It’s the quickest way to put me on the defensive.

There are comments and questions about my health that just as quickly do the same.  While I know the words are usually spoken with good intention, I struggle to maintain my filter.

It’s common for those with chronic illness to be more sensitive to stimulus –sounds, smells, lights, textures.  Shopping areas, athletic events and restaurants overwhelm me.  I experience everything with a tremendous intensely and become anxious and exhausted.  Imagine all of the sights, smells and noises you hear in a full week smashed into the span of 15 minutes.  It’s too much.

I’ve learned to avoid public areas as much as possible, but there are times when it’s unavoidable.  Children require food, so grocery stores must be traversed.  We are forced to adapt.  Not just me, but my whole family.  My daughters know they can’t yell or turn the television up too loud.  My son knows the earbuds I wear during basketball games are to block out cheering and whistles.

Even our meal prepping is different.  My husband enjoys making venison, slow cooking it with taco seasoning in a crock pot overnight.  What once made my mouth water now propels me to our bathroom to vomit.  I will wake from a dead sleep once the aroma hits our upstairs bedroom.  As a resolution, the crockpot now simmers overnight in our storage building and is returned to the kitchen only when it’s ready to be transferred to a plastic container.  This system took time and trial error, but it works for us.

Most chronic illness warriors bemoan similar experiences.  It stands to reason that hypersensitivity extends to comments as well.  We are not this way by intention.  We adopt the sensitivity somewhere along our journey.  We don’t want to be this way, sick and sensitive, but we are nonetheless.

Just as we with chronic illness make deliberate efforts to manage our physical sensitivities, we must also train our minds to hear those cringe-worthy comments the way they were intended –as love and support.

This three-part series of posts aims to address that goal.

I asked members of online support groups to identify the statements or questions about their illness that most bother them.  Compiled from hundreds of reactions, some absolutely abhorant, this is the Top 12 list.  But this isn’t just the typical “What Not to Say To Someone with Chronic Illness” article.  Sure, that’s part of it, but it’s also about learning how to hear our friends’ kind intentions in words that make us cringe.

For those with chronic illness, we must first acknowledge our own sensitivities. Only then can we figure out a way to re-hear a few of the most readily disturbing remarks.  Rather than holding in hostility or insecurity, rather than filterlessly responding to someone who is likely trying to be on your side, let’s resolve to find a better way to adapt.

For those trying to help a loved one with a chronic illness, this post is for you as well.  I can almost guarantee you have spoken at least one of these lines.  I’d also bet until this article you thought you were being kind and helpful, trying to say something, anything, to make your loved one feel better.  You might feel lost; after all, if doctors can’t fix your friend, how can you?  Right?

This series will help you reexamine the words you have used and learn better methods of support for those with chronic illness.  Trust me.  Your loved one needs you now more than ever, even if she doesn’t return your phone calls, cancels plans with you often, and only seems to want to discuss her illness.  We all desire connection.

With each frustrating line, an explanation and a more useful approach is suggested for friends of chronic illness warriors. Inevitably, frustrating lines will not be eradicated overnight.  Chronic illness warriors must adapt to maintain friendships.  Read these “instead” lines repeatedly.  Train yourself to automatically hear the frustrating line as the more purposeful one.  Yes, it’s tough, but it’s not as difficult as isolating yourself from those who love you.

Are you ready??  Here we go.

#1 YOU DON’T LOOK SICK.

Intended as a compliment, these words actually hit on our biggest insecurity.  Because our illness is invisible, we are terrified that people do not believe we are really sick.  We’ve seen doctors who question our diagnosis, even in the face of positive test results.  When a friend tries to tell us we look good, we hear that we don’t look sick enough to be sick.  We hear speculation instead of support.

Instead:  You look great, but are you feeling as good as you look?

This allows you to express your opinion that the Chronic Illness Warrior appears better than the last time you saw her, and it acknowledges your understanding she is likely experiencing invisible symptoms, such as pain and nausea.  It creates a warm space for safe, meaningful conversation.

#2 YOU’RE CANCELING ON ME AGAIN?

Let me state this clearly.  We do not want to be alone.  We crave the same connection as everyone else.  When we wake up feeling crappy and realize we aren’t physically able to keep a commitment, we are disappointed and angry.  We feel guilty for canceling yet another date.  We worry that our friends will eventually stop reaching out to us.  We hate being unreliable.  As frustrating as it may be for you, our friend, it is just one more event our illness has stolen from us.

Instead: Let’s plan to ( ________) on Friday, but don’t feel badly if you have to cancel. I understand that the degree of your symptoms changes day to day.

We will still despise canceling, but if a friend extends this kindness and understanding from the get-go, there is less pressure for us to push ourselves when we should be resting.  We know it is hard for outsiders to fathom the day-to-day, sometimes hour-to-hour, symptom changes of our illness.  Heck, we deal with this every single day, and we still aren’t used to it!

The bottom line….please keep making plans with us, and please continue to understand when our body betrays us and we are forced to cancel.  It really does hurt us even more than it hurts you.

#3 I KNOW HOW YOU FEEL.

This is acceptable if you suffer from the same illness as me, but even then, chronic illnesses, especially those considered auto-immune disorders, affect victims differently.  We are each designed uniquely; therefore, our bodies react divergently to illnesses.  No two people experience Lyme disease exactly the same way.  Although there is some comfort in knowing we are not alone, that others have travelled this road and survived, hearing “I know how you feel” from a healthy friend is not helpful.

Instead: Help me understand your illness.

We want to be validated and understood.  We want to be able to discuss our illness and treatment with our friends.  After all, this is a significant part of our lives now.  To avoid conversation about our illness is equivalent to avoiding topics integral to who we are, like our children or our career.  Take some time to research our chronic illness.  Let us know you are making an effort to grasp our struggles.  It will mean more than you could ever imagine.

#4 IF YOU NEED ANYTHING, JUST LET ME KNOW.

This is probably the most overused line in the world of grief.  I’ve said it.  I bet you’ve said.  And I would also bet when we said it, we meant it 100%.  Here’s the problem. It’s too broad for the chronically-ill to process.

Instead: I’m going to (insert location here). Do you need anything?

We are working hard just to walk or breathe or sleep.  We are keeping track of complicated medication and supplement schedules.  We are in too much pain to get quality sleep.  We are so stinkin’ tired.  We need help; we’re just too darn sick to articulate it.  We may not even know how you can help.  Delegating feels like just one more decision in our already complicated life.

However, if you share that you are going to Target to pick up dance tights for your daughter and ask if I’d like for you to pick a pair up for my little dancer, that answer I can manage.   Knowing you are going there anyway makes me feel like I’m not inconveniencing you.  It’s hard for me to ask for help, especially in the general sense, but if you make a specific offer, I’ll probably take you up on it.

We all need a little help.

To be continued in Part 2…..

 

6 thoughts on “You Don’t Look Sick: Part 1

Add yours

  1. I love that you’ve included solutions along with the unhelpful lines 🙂

    My favourite is “I’m going to (insert location here). Do you need anything?”

    When someone says, “If you need anything, let me know”, I’m grateful that they care, but I’ll almost NEVER contact them to say, “Hey, I’m completely out of milk, and so I have nothing to eat”. (My diet is very limited due to my stomach refusing to digest food, so A2 milk and rice flakes are my staple).
    I know if I asked, they would do it for me. But I don’t want them stop halfway through making dinner, or bathing the kids, just to drive down to the store to get me some milk.

    But if someone says, “Hey, I’m at the grocery store! Do you need anything?”, most of the time, if I needed something, I’d gratefully say, “Hey, thanks for offering! I’m totally out of *xyz*. Would you mind picking some up for me?”

    xx S.

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  2. Jena this is very well written with specific examples and different approaches. The comment “call if you need anything” is probably the most overused comment ever!”

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  3. Ugh, I’m so tired of the “you don’t look sick.” I know I don’t look sick, but I feel sick. And although I’m not looking for your sympathy, I also don’t want to feel like everyone fails to acknowledge the real pain that I experience on a daily basis.

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