Chronic invisible illness — but you look SO good.

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My hubby had a splitting migraine for most of the week. 

He got out of the house a couple of times but for only a short jaunt. Yesterday he took all of the pain meds he could so that he could walk a few doors down the block to hear some live music.

Twice in a thirty minute time he was told how good he looked by two friends that have some small awareness of his health issues.

I really think they meant it kindly. I do. But some don’t.

They say it in a tone of disbelief. You can almost hear the thoughts tumbling around in their heads. Sometimes small remarks tumble out of their mouths, too.

Oh, you must be pulling my leg about your health issues. You’re not so bad off. Why aren’t you working, again?

 My sis in love got some similar remarks and responses. (No one really expects a stage four cancer victim to hold down a job. That’s a relief!) She was such a fighter and an upbeat person. She made a huge effort to leave the house looking good.

In fact, for most of the four years she fought stage four cancer, you would have to be around her for awhile to catch on. The joy of the LORD truly was her strength.

Being on her care team gave me an inside glance of the true nature of living with cancer in your bones. At home you tend to let your hair down, so to speak.

I saw her sit and groan softly many times through unbearable pain. Gratefully accepting a cup of tea she could barely stomach, though she wanted it so badly. Many barely touched plates of food…

For many years I have regularly seen my hubby struggle to make it out of bed for a few hours at a time. He consistently naps every day after laying in bed until late in the morning. His bones hurt every day, too.

He can look good and still struggle with a boatload of pain.

Looks can be deceiving in so many ways. Tell folks how you feel, and you’re a whiner. Put on your game face, and you’re not as ill as you’re  reported to be.

It’s an odd conundrum that many chronically ill people face and their spouses, too.

Understandably, you feel on the defensive at some of the pointed or careless remarks that get shot your way. I know I do.

I sat and listened as my sis almost cried about several folks asking her when she was due. And, are you excited about the baby?

In fact, she had already lost her ovaries to cancer. Her liver was so swollen she looked like she was starting her second trimester. But she loved her two babies like there was no tomorrow.

How do you deal with these unwitting arrows that people shoot at you?

“HE is my defense. I shall not be moved.”

I have listened to Marty Goetz’ CD, “HE Is My Defense” dozens of times in the past few months. The Scripture set to music heals the wounds. Jesus is the “horn of my salvation”. That horn can either call for help or push its point in my defense.

I need a Defender! I need a Refuge. I need the solid Rock to stand on.

Truth. I, too, have inflicted needless wounds with my tongue. If we live long enough, we all fall short in this area. Greatest. News. Ever. His wounds have paid my ransom.

Forgiveness. I need to extend grace and forgiveness to those who act like we have leprosy because of the chronic illness in our family. Or those who carelessly speak. Why? His Word is ultra clear. If I don’t forgive, it is clear I have not been forgiven. Those who forgive the most love the most like Jesus.

Understand that some folks will never “get” chronic illness. Forgive. Rest in His defending love. What are some ways you respond? How does invisible illness challenge your family?

 

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2 thoughts on “Chronic invisible illness — but you look SO good.

  1. Yes! I don’t read every post right away, but when I do, I’m like, yes! What’s?! Is this lady living in my house? No one understands! Maybe my mom who has lived with us some can have some idea, but no one can no what it feels like. I agree though, people are always saying things like, “so what disease does he have?” “Is he done with his treatment yet?” “He looks great!” Yeah, he does, for you! Come home and you might find him curled up in the fetal position moaning, or you might call him from the grocery store on a treatment day because you see a missed call and when he answers he struggles to get words out, and then can’t and the line goes dead and you wonder if he’s passed out or what you will find when you get home. They don’t see the fight that happened last week when he complained about you sending out a work email at 9:30pm because he wanted to hang out. And you responded that you would like to hang out with someone any night of the week but that he’s always too tired or sick. But instead you sit alone every night, utterly alone wondering what happened to your life. But no one sees that. I think the biggest step is accepting that no one will understand and you are in it alone other than God. When you stop looking for someone to “get it” it gets a little easier.

    Liked by 1 person

  2. Karen, it is so true that no one can understand fully another’s suffering. The point is that we ought to TRY to love and care for and encourage each other. It stinks when the church of Jesus Christ fails to try. I really, really want to do better than that with this blog. Not just vent, but bring hope and encouragement to others out of my personal struggles. I share negative things, true. But faith is a fight. The battle gets bloody and ugly. Hang in there! Jesus is your Defense and Shield, too.

    Liked by 1 person

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