13 Things People With Chronic Invisible Illness Want You to Know

Chronic illness is the Great Censor. It is such a demanding, consuming, grueling battle that the chronically ill person rarely has the bandwidth to debunk common, painful misconceptions about her and her illness.

And oh my, there are so many misconceptions about chronic invisible illness. People think chronic invisible illness is fake — a ruse to get attention or spend "quality" time in bed; they think it's mental; they think Health Warriors are lazy; they think they're prone to exaggerating their challenges, and on and on and on.

It's stunning and crazy-making how often Health Warriors have to navigate these hurtful misconceptions. You guys, there were days when I was in such a dark place that the frequent, painful accusations and pervasive lack of understanding made me want to die. And gosh — I'm hesitant to write that because of the times people have chastised me for claiming my illness could actually be serious enough to make me want to give up. These wounds run so deep.

And here is the other thing: because Health Warriors and their illnesses are so misunderstood — and because they do not have widely familiar labels like "cancer" — they are not getting the help and support they need from their churches and other communities.

Now that I am healing — now that illness is not acting as a Great Censor — I am beginning to share, on behalf of all the Health Warriors, what it is like to lose your life to chronic invisible illness, with the hope that increased understanding will mitigate the suffering of Health Warriors just a bit.

In today's video, I share 13 things people with chronic invisible illness want you to know.

If you are a Health Warrior, I hope this video makes you feel less alone and can be a resource for your communities. I know so many of you hesitate to ask your communities to try to understand your battle because you don't want to rock the boat — to cause any interpersonal tensions. Debunking stubborn misconceptions can be a real boat-rocker, I know. I rarely challenged misconceptions about my illness for this very reason.

And yet, I wish I had. I wish I had posted resources on social media, helping people understand. I wish I had emailed resources to my inner circle. I wish I had asserted myself when others imposed their misconceptions on me. I wish had been my own best advocate.

If this video captures a bit of your experience as a Health Warrior, or if you have other resources that do, I encourage you to share them, to be your own best advocate. If we are going to change painful misconceptions, then we have to be intentional about educating our communities.

If you are not sure how to share helpful resources with your community, perhaps you could share from a place of vulnerability (vulnerability can be so disarming), like this (feel free to copy and paste this):

Here is the thing about chronic invisible illness: it can cause so much shame, so much isolation, so much misunderstanding. I have often wanted to share my experience of chronic illness, but my sense of shame and anxiety about what others might think has prevented me from doing so. However, being understood mitigates some of the suffering of chronic invisible illness, so today I am trying to be courageous, and I am sharing this resource that will give you a peek into chronic invisible illness. Thank you for walking this journey with me!

And now, my friends who do not have health challenges (but who are most certainly fighting other battles): would you watch this? And then, would you be advocates for all the Health Warriors you know — and the ones you don't know? Would you share this video, or other similar resources, in your communities? Trying to understand Health Warriors and their illnesses — and helping others understand — is one of the best ways you can love them. It is salve on their many oozing wounds.

And finally, I want to thank so many of you who have been exactly what I needed in my darkest moments. I had an extraordinary number of people interact with me out of their misconceptions, but I had even more people (YOU!) extend grace, understanding, encouragement, and faithfulness in prayer. You buoyed me under the weight of all the hard stuff, and I love you dearly for it.

Here is the video (click HERE to be rerouted to YouTube):

 Fight on, all you Warriors, those fighting health battles, and those fighting other hard battles.

I'm cheering for you, Home Skillets.

-Sarah

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Overcoming depression when you have Lyme disease, POTS, CIRS, Fibromyalgia, Chronic Fatigue, Part 1: "First Steps"

My friends,

I've got a new thing in the works! As I heal, I'm able to collect and compile so much of what I've learned on this gnarly, glorious journey. At first, I planned to put everything in a chronic illness survival handbook as a resource for my sick friends. But as I've prayed, I've decided that the best way to put this information into the world is via Youtube.

And so, today I've linked the first of many videos in this series.

Today, I share some of my journey with depression, and I share some practical steps you can take to confront and manage your depression.

Although this series was born out of my desire to help my friends with systemic illness, this video is for anyone who is dealing with depression — for those who have other illnesses and those who don't.

In the latter half of the video, I describe three activities that can help you confront and manage your depression, including writing your own Psalm of Lament to help you process your depression and its accompanying grief with God. I've created a template to guide you through writing your own Psalm of Lament. To get the Psalm of Lament Activity Guide, enter your email below.

Get Psalm of Lament Printable
 

Find the video HERE, or watch below.

I hope this video is helpful, my friends!

I'm cheering for ya, Home Skillets.

-Sarah






© by scj

The Discipline of Doodling

My dear friends,

I just tried writing a post about all of the change I'm experiencing in this new season — about how it's thrilling and invigorating and overwhelming all at once — but I couldn't do it. I've not been able to write much about spirituality and discipleship the last two years because I've just been too sick; and now, as I'm healing, I feel like I need time to step back and survey all of the renovative work God has been doing before I do the hard work of writing about it. So instead of finishing my post, I'll just tell you that I am delighted to be stepping into a season of radical change, but I'm also scared. I have to preach truth to myself a lot in order to combat the fear.

Lately, I've embraced what I call "The Discipline of Doodling" as a means of preaching truth to myself.

Here's what I do:

I pick a verse or quote that encourages and challenges me, and then I doodle it.

I carefully write it in fun letters, and I doodle pictures around it, and I spend all the time that takes meditating on the truth on the page.

 
When I'm done, I post the doodle somewhere in my room so I'm regularly reminded of its message.

It's proving to be a wonderfully life-giving spiritual discipline.

If you want to try the spiritual discipline of doodling, HERE are the pens I use.

And if want some doodling inspiration, HERE is a book that may help you.


Happy Sunday (and happy doodling!), sweet friends of mine.

I'm cheering for you.

-Sarah




© by scj

Hope

I never used to think about hope much, but now I know: hope is jasmine winding its way through your insides, climbing into your most intimate parts, filling the empty spaces with the fragrance of spring.

When you are sick for years and years, your hope of health shrivels and droops until it is nothing more than a few black, spindly stems. When this happens, it is easiest to let hope die, but you mustn't.

You must coax your hope back to life with the water and air of imagination. You must imagine you are climbing Half Dome, or learning to surf, or hosting a tea party, or running in the rain, and you must imagine you are doing it all with ease. Do this daily, and with time you will notice your hope has sprouted the tiniest waxy, green leaves. One day it will bear fragrant blossoms again.

For months I've been working to cultivate hope by imagining myself exploring Portland with my siblings, a cup of tea in hand and the neurological firestorm at bay. And you guys, today I did it, just exactly the way I imagined.

It was wondrous.

© by scj

Thank you

Dear friends,

Last night I was feeling a little anxious as I looked toward today. I wanted New Year's Eve Day to be different and special — to somehow signify the change I've been working so hard toward these last several years— so I determined to make the day memorable.

I've been hoping and praying for snow during my visit to the Pacific Northwest, and since the Portland area doesn't get much, if any, snow I decided I would go hunting for it up in the mountains. But my dad worried that the car (and its southern California driver) wouldn't do well on the icy mountain roads, so that adventure didn't seem like a wise option after all. I settled on a hike in Portland instead. But then those plans fell through, too, so I decided to go on a walk in the neighborhood to soothe my disappointment. 

As I walked, I thought back to last spring. I spent the spring much like I spent the last few years: researching treatments and clinics, implementing medical protocols, trying new doctors, and meeting with old doctors. It was brutally exhausting and generally fruitless. In May, I realized I had been working so hard to get healthy that I hadn't given God much opportunity to advocate for me, and I felt a strong prompting from the Holy Spirit to cancel my appointments at new clinics so He could direct me to life-giving treatment. I cancelled the appointments, and two weeks later, He led me to limbic system retraining.

Since then, I have felt convicted to practice the discipline of waiting for God's blessings — of letting Goodness and Mercy pursue me, the way the Psalmist describes, rather than chasing them with frantic ambition. The more I have practiced waiting, the more convinced I have become that in this season, God wants me to stop hustling, to stop planning, to stop doing all of the things that seem so very sensible so he can provide for me: a Dad taking care of his beloved girl.

As I planned my adventures this morning, it didn't occur to me that today, of all days, God would like to show me his care for me by filling my day with good things, apart from my own efforts. So halfway through my walk, I asked him to make the day special — to mark it with something exciting to signify a new chapter in life.

When I got back to the house, it started to snow.

The big, feathery flakes felt like a reminder of God's attentive care and a symbol of the newness that lies ahead. It was the perfect New Year's Eve gift.

As I look toward 2017, I want to thank you for your support in 2016. Many of you have been faithful prayer warriors on this roller coaster ride, and words don't do justice to my gratitude for your prayer support. Your prayers and notes of encouragement are two of a few things that have mitigated the suffering of the last year. I also want to thank those of you who have contributed financially to my medical fund. Your generosity is a wild and wonderful gift to me. I wish I could give you each a hug in person and explain to you how all of your support has deeply influenced this journey.

My friends, I pray your transition into the New Year is filled with reminders of God's persistent goodness and mercy. There is no god like our God; and there is no better life than a Life in Him.

I'm thankful to be walking this journey with you,

and I'm cheering for you.

Happy New Year,

Sarah







© by scj

Prayer support

Hi Friends,

I'd love your prayers in the coming weeks.

The last two months I've had back-to-back colds that have often been like lighter fluid on the neurological fire. They have made life extra hard.

As I head into the last few weeks of the semester, I have an absurd amount of homework, along with the usual piles of grading, and I'll need to be cold-free in order to do it all.

Would you pray for protection from bugs and other neurological triggers between now and the 20th? I'd love to be able to finish the semester's race.

Thank you!

Cheering for you,

Sarah


P.S. These are the Jackson girls:

I love them a lot, and I love this photo, which is why I'm sharing it with you. 





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Sam and Amy

My friend Sam got married yesterday.

I met Sam four years ago when he attended a Thanksgiving dinner I hosted.

Sam was in LA to pursue an MA in philosophy at Talbot, and I was teaching at Biola two mornings a week, so after that Thanksgiving dinner, we occasionally ran into each other on campus. We also attended the same church, and when I was well enough to go to Sunday service, we would see each other. With time, I observed enough of Sam to learn he was kind, generous, and diligent in prayer.

About two years ago, Sam emailed me. He'd read a recent blog post about the nightmarish turn in my health, and he wanted to tell me he was praying for me daily. He also shared that he was in New York City getting treated for a rare and especially deadly form of cancer. He wondered if he could encourage me in my battle with health problems since he was fighting his own.

A google search of Sam's form of cancer revealed he had a very slim chance of survival. In fact, yesterday his best man shared that when Sam was first diagnosed, he asked God to withhold the funding to start treatment if he wasn't going to survive. He didn't want his family to shoulder the financial burden of his medical bills if he wasn't going to live.

I have learned from mutual friends that Sam looked like a Holocaust victim as he lay in that hospital room, enduring round after round of chemo. His parents refused to leave his side during those months of treatment, and his closest friends wondered if the next phone call from New York would bring grievous news. 

Somehow, as Sam underwent chemotherapy, surgery, and experimental treatment, he found the fortitude to send me almost daily messages of encouragement. He sent me poems, songs, and Bible verses to buoy my spirits; he offered financial help for my medical bills; he suggested prescription medications when our symptoms overlapped; he offered to connect me with people in the area who could run errands for me; and he offered to forward my recent test results to his doctor friend. I often felt that I was the one who should be encouraging Sam, but looking back I can see that God wanted me to learn from Sam what it looks like to be bread broken and wine poured out for those in need.

When Sam first emailed me from New York, I felt trapped in the Valley of the Shadow of Death. Some days, the darkness of that valley made me quake in fear; other days, it made me want to die. But then Sam reached out, and he came alongside me in that valley, and he said, "With God's help, we will pass through this." Everyday, again and again: "God is with us, and he will carry us onward and upward." His presence and courage were God's astonishing grace to me.

My dear friend Sam is cancer-free today. He will finish his philosophy degree next month, and he and his new bride will move back to India where they will minister together as he begins work for Ravi Zacharias's ministry. I do not know Sam's wife well, but I know she is beloved by many. She is a nurse with a heart for India and a reputation for kindness, faithfulness, and generosity; and I am delighted she and Sam found each other.

Yesterday I kept trying to find the words to express what Sam and Amy's wedding meant to me, but I couldn't. I felt I was watching Sam stand on the mountaintop, his vibrant bride at his side, their families and friends hemming them in, their future full of hope, and the Valley of the Shadow of Death down below, behind him. The wonder that swelled inside of me was too big to be constrained by words

Dear Sam and Amy, what a joy it was to watch you embark on this new marriage-adventure together. I pray God's best for you, and I thank him that I get to be one of many who will be blessed by your union.


With much love,

Sarah




© by scj

Prayer Requests and Support

My friends,

My time here in the Pacific Northwest has come to a close, and tomorrow I head back to LA where I will continue to rest. Though my work load has been minimal the last six years, I'll carry an even easier load this fall as I try to get on a healing trajectory. I'm hopeful the rest will be productive in the best possible ways.

I continue to remain hopeful that God will use DNRS, along with my other treatments, to completely heal me with time, but in the meantime, this journey continues to be more like a quest through sawtooth mountains than a zipline through the jungle, and I covet your prayers:

Here are my most pressing requests:

1. For special grace as I prepare to fly tomorrow after/during a very challenging week.

2. For protection from the Enemy who wants to kill and destroy.

3. For encouragement in Christ and comfort in his love.

4. For laughter and joy.  

5.  For peace and trust in the good things God is preparing for me in the future.

6. For physical, mental, emotional, and spiritual strength as I forge ahead.

7. For something unexpected to bring me joy the way my parents' puppy has. She has been a therapeutic companion and tremendous blessing this summer, and I will miss her.

8. For complete healing sooner rather than later.
 

Thank you for your prayer support, my friends. It's an immeasurable gift to me.

If you'd like to support me beyond prayer, my brother recently put together a site to raise medical funds for a year's worth of my  medical expenses, as the cost of my doctors appointments and treatments continues to be well beyond my means.  If you feel moved to contribute, or you're able to share this link on social media, I thank you in advance! And a big thank you to those of you who have already contributed. I feel overwhelmed by your generosity.

https://www.payit2.com/fundraiser/86102


Hopeful, light-filled Monday, my friends.

-Sarah

© by scj

Limbic system retraining update: Exercise

Yesterday I jumped on the trampoline for one hour. Yep, you read that right: one HOUR. I broke my jumping into two sets, but the second set was 45 minutes, so: HALLELUJAH.

This is the first time I've sweated (I love sweating!) and had endorphins (I love endorphins!) from exercise in ages. And there's this: the day before yesterday I spent much of the day adventuring, and when I woke up the morning after my adventures, I'd recovered!

I've also been up more the last few days, cooking, baking, cleaning, and conversing, and it's felt good — Hurrah!

Thank you, dear Jesus, for this progress.

And thank you, dear pray-ers, for supporting this process in prayer.


© by scj

Happy Father's Day, Daddy-o

A letter to my dad, to honor him this Father's Day:

Dear Dad,

I vividly remember my first 400-meter hurdle race at the collegiate level. I remember the bright stadium lights, the spongy red track, and the surge of adrenaline and nausea I'd come to expect before every race. But most of all, I remember that you weren't there, because, for the first time in my life, I was racing 1,000 miles away from home.

I'd never raced without you in the crowd.

Somehow, in the midst of pastoring a growing church, teaching at the seminary, and pursuing a doctorate, you were at every single one of my pre-college track meets, starting with the all-city meet when I was in 5th grade.

Dad calling someone with the results from one of my high school meets

You made sure I had gatorade and snacks before the meet and then watched me warm-up from the sidelines. When it came time for my race you positioned yourself on the home stretch where you knew I would hurt the most. I'd round that final curve with vomit rising, breathing labored, muscles screaming in pain, and ears utterly deaf to the shouting stadium-crowd.  All I heard was you, cheering:

"COME ON, SARAH JACKSON!!!!"

There was never a college race when I didn't remember those words urging me through pain and drowning out hundreds of other voices.

Now that my track days are over and I'm learning what it is to battle loss and discouragement in this life-race toward an eternal prize, I find myself remembering your voice shouting my name.

You've helped me understand the fierce and tender love of God the Father as I run toward my heaven-home, Dad.

Sometimes it's hard for me to believe that the God who sculpted the mountains and breathed the stars in the sky even knows my name, much less calls it. Sometimes it's hard to believe he's the God-who-sticks close—that he will provide for my needs and wants to be intimately involved with my life.

But when I remember the way you bought me the expensive sets of track shoes I needed each year; or the way you'd make me a big lunch before track meets and give me a timely pep talk; or the way you'd take time off work, drive hours and hours, and book hotels for my out-of-town meets, my little heart gulps big from the glimpses you've given me of Father God's heart.  If he is infinitely more good than you, how much more must he love me?

Dad hugging me after a race

My senior year of high school I had lofty ambitions for the state track meet. Month after month you watched me pour myself into training for my senior season. You watched me work and worry, and work some more.

And then one day a reporter called the house to interview you about my season and you told him something I'll never forget:

"We delight in Sarah, whether she runs fast or not."

If there is one thing about God that my heart often struggles to believe it's that he delights in me, just the way I am.

But for 31 years you have delighted in me, Dad, slowly teaching me that when God calls himself Father he means he takes joy and pleasure in me, and in being my Papa.

You taught me this when you'd scoop my little girl self into your arms and spin and bounce me back to my bedroom at bedtime; when you laughed deep and pleased at my girlish attempts to crack jokes; and when, after a long day at work, you'd wrestle with us kids on the living room floor and tickle us till we were breathless from laughter.

Dad and I in SoCal, checking out colleges my senior year of high school

As I grew older I saw the way your delight in me impelled you to protect and care for me.

You showed me my value when you warned my first boyfriend that if he ever did anything disrespectful to me he'd have you to face.  My heart still surges with gratitude when I remember that.

You showed me I can rest in your care when you outfitted my kitchen with new appliances four years ago because I was too sick to do it myself, and then bought me flowers for my beloved patio when you visited last year.  I smile with satisfaction every time I water them.

At the beach

I could tap-tap away at these keys for hours and hours, remembering the ways you've taught me the love of the Father, Dad.

 One of my favorite pictures: after college graduation

I know, though, that the greatest gratitude I can express for you is not strings of symbols on a blank page: what you yearn for most is that I would live a life devoted to God, the greatest and truest Father.

When I left home for college nine years ago you gave me a necklace with a delicate gold heart pendant.  You also wrote an accompanying letter expressing your love for me and your hope that I would always say yes to Jesus.  You closed the letter with a postscript:

"I hope you always entrust the human version of the enclosed gift to our Father in heaven.  'Above all else, guard your heart, for it is the wellspring of life' (Proverbs 4:23)."

I wear that heart necklace often, and when I do I try to center my heart on the Father in heaven whose love, amazingly, eclipses yours.

And when this life-race wearies and daunts me, I imagine Him cheering me on through doubt and despair toward victory over pain: his voice the only one I can hear amidst the din of other voices.

Thank you for teaching me to listen for His voice and trust His heart, Dad.

I love you.

Happy Father's Day,

Your Sarah Christine



© by scj