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'You Don't Look Sick': What to Say (and Not Say) to Someone With a Chronic Illness

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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 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 intensity 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 crockpot 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 cringeworthy comments the way they were intended – as love and support.

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 abhorrent, this is my 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 filter-lessly 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 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?

I hope this 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 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 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 people 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.

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

4. If you need anything, let me know.

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

Instead: I’m going to ____. 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.

5. At least it’s not [fill in another horrible disease here].

The most popular fill-in-the-blank for me has been “cancer.” Please don’t say this. Do not compare illnesses. We all have or will have experienced our own personal grief, and at the time, they are each tragic in their own right. Saying the chronic illness warrior should be thankful because she is theoretically less sick than someone with cancer is like saying we shouldn’t be happy because someone else is more happy. Comparisons are not cool.

Instead: Do you feel like you’ve made progress since you were first diagnosed?

The only time comparisons might be OK is when we compare where we are now in this illness and our treatment to where we were when we first got sick. This simple question, or if applicable, “I’m amazed at how far you’ve come,” lets the warrior know you understand it has been a tough road.

6. If only I could be sure your health would be OK by [fill in the date here].

Twice now I have heard this exact line in my professional career, and it’s the ultimate dagger to what little pride I had left. After devoting 15 years to the education of high school students in what became my hometown, these were the words I heard from my superintendent. Recently I heard the same words during a discussion about a potential part-time job opening. Both moments brought angry tears to my eyes. I am well aware of my illness; I do not need anyone else to tell me I may not feel well enough to return to work. I grapple with that fear every single day.

Instead: None of us can be sure we’ll be healthy tomorrow.

The reality few want to acknowledge is tomorrow is not guaranteed for any of us. You could have a stroke this evening at your dinner table. You could suffer a heart attack while driving to work. You could be bitten by deer tick on your wedding day. The total randomness of those whose lives are turned upside down by sickness often scares the crap out of those watching from the sideline. I understand the risk taken by hiring me. I really do. But I wouldn’t apply if I didn’t believe in my abilities. Give me a chance. If I fail, no one will be more devastated than me. Unlike most employees, I know the value of health, profession and purpose.  My open eyes make me a tremendous asset.

7. You can beat this! You’ll be back to normal in no time.

As difficult as this is to admit, this is my new normal. I will never again be the person I was before my heart stopped working properly and Lyme ravaged my body. I have experienced pain worse than childbirth, the demoralization of depending on my husband to wash my hair, my own embarrassment in requiring a wheelchair. The odds of my body returning to 100 percent are very, very slim. But even if by some miracle, I were completely healed, I still could not be me.

For that, I am actually thankful. I see life with more empathy and understanding. I’ve slowed down enough to see the beauty all around me. I’ve met people who inspire me daily.

I’m so far from normal, I’m not sure I even know what that is.

Instead:  We got this.

Very simple, yet profound. You’re letting the chronic illness warrior know she is strong, and the “we” indicates you are going to help her through this journey. That means the world to us. The illness has taken so much from us already; we want to maintain friendships, especially ones with sympathetic ears. We can’t beat this illness… that’s why it’s called “chronic.” But with the love of our family and friends and with excellent medical care, we can get ahead of it and find joy in our lives again.

8. My [fill in title, i.e. uncle, friend, teacher, sister-in-law’s third cousin twice removed] had the same illness you have, but he’s fine now.

I knew nothing about Lyme disease until I was diagnosed with it. Now, it seems everywhere we go – restaurants, kids’ birthday parties, in or out of state – someone tells us they know so-and-so who has or had Lyme. In some ways, it’s comforting to know I’m not the only one. But there’s two downsides to this. I either get to hear the individual is “all better,” which means he likely received the antibiotic treatment immediately after the bite, or I get to hear the person is bedridden or psychotic.

People, this line is not a ray of optimism.

Instead:  You want to hear a funny story?

Yes, yes, yes! We sure do. The day-in, day-out business of fighting our chronic illness makes us crave bits and pieces of the real world. Share your funny stories. Tell us about the time your son told the dentist that Mommy and Daddy “do the f-word all the time.” (True story… but the f-word was “fart.”)

Help us out of our funks. Bring us back to the land of the living. Talk with us about everyday stuff. Tell me about the silly thing your child did. Listen to me as we weigh the odds of a new treatment plan.

Be present. That’s really all we want.

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 10 miles and the 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 die by 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 it’s estimated that nearly a third of people with Lyme disease attempt suicide? 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?

It’s best practice not to reference a woman’s size. You don’t know what battle she is fighting. Overweight or underweight, 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.

Follow this journey on A Broken Crayon.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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Originally published: April 22, 2016
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