Far too often grappling with a chronic illness is a fight not only for your health but also for your dignity. Many times the medical community can unintentionally compound the pain of those suffering by minimizing their experience or even invalidating them entirely. It can take years or even decades for some patients to get an answer to what is plaguing them, and for some the diagnosis never comes at all. Here are some actual responses I have encountered from doctors in my 15 year journey to getting my diagnosis of Lyme disease. [Read more…]
Since I often blog and speak about my chronic illnesses, I occasionally find myself on the receiving end of an email that sounds something like this, “Hey Stephanie, my friend so-and-so just found out they have insert diagnosis here. I really want to send them a care package or a gift to show them I care. Could you give me some kind of idea of what they would want?” In fact, I get these sorts of messages so often I’ve decided to dedicate an entire blog post to answering this, so I can point people towards this list in the future.
It’s important to remember: whether your friend or family member is facing a life long chronic ailment, is spending the next few months enduring chemo or radiation, is facing a long bedrest for pregnancy complications, or is learning to cope with a new physical handicap – every case, and every person, will be different. Not every gift is appropriate in every circumstance or personality, so above all, don’t be afraid to ask. But in the end, I know first hand how hard it can be to ask for help even when it’s offered, so hopefully this list will offer some great ideas when you have that friend says “it’s ok… we’re managing” (Yeah, guilty as charged on that one!)
Caring Crate Subscription Box ($39.95 per month, or discount if ordering multiple months)
Subscription boxes are all the rage right now, and this incredible company decided to create a box specifically to minister to the needs of the chronically ill. Every box has beautiful self care products for the body and mind, each hand chosen with those suffering from long term illnesses in mind. They are the perfect gift for somebody going through cancer treatments since you can arrange a 3 or even 6 months subscription so that when the initial wave of cards and calls start to taper off, they are still receiving beautiful reminders each month that someone is thinking of them.
Spoon Necklace ($14.99)
Members in the chronic illness community have adopted the spoon as one our most important symbols, often referring to ourselves as “spoonies.” The inspiration behind this comes from an incredible post called The Spoon Theory, that you can read all about here. A spoon necklace is a touching way to tell your friend that you understand the choices she faces each day with managing her “spoons.” I suggest adding a thoughtful note to let them know you always want them to have an extra spoon for those especially tough days.
“Does your child have any special challenges I should be aware of?”
Two tiny blank lines staring at me, enough for maybe three sentences if I wrote very narrowly. Yes, Aidan is on the autism spectrum, and has a variety of specific learning challenges in the classroom, but there was already an IEP file explaining these things at length. There wasn’t space here to revisit those again.
“Does your child have any special challenges I should be aware of?”
Two tiny blank lines, waiting for me to explain. My face was beginning to flush and I could feel the fog in my brain growing thicker as I grew more and more flustered trying to turn thoughts into words on this cheery yellow paper. The neuropathy in my hands was making it harder to grip the pen and I could see the words on the page start to shift out of focus the longer I tried keep them in view.
“Does your child have any special challenges I should be aware of?”
I scribbled out lightly, “Yes, I have Lyme disease.” [Read more…]
A sweet friend of mine took to Facebook to share the news of a new and difficult diagnosis she was trying to process. She was grappling with news of a condition that will be a life long struggle with pain and disability, and she was turning to her friends online for some much needed support. A few comments down, it happened:
“Don’t speak that over you. You do not have *diagnosis*…I rebuke that in the Name of Jesus! God wants you well. Speak healing over yourself.”
Just a day earlier a well meaning connection had sent me a private message on Facebook, suggesting I should listen to a sermon titled that exact same sentiment: God Wants You Well. The sermon description included the lines “[Religion] even tries to make us believe that sickness is a blessing. That’s just not true. God wants you well.” Seems like a pretty positive message right? I mean, Jesus DID go around healing the blind and asking the lame to walk, so clearly He doesn’t want anyone to be sick…right? He only wants blessings for His followers: all the good and perfect gifts from the Father, and everything else? Well those are the attacks of Satan – obviously.
Friends, I hate to be the bearer of bad news, but as great as that sounds? It’s totally not Biblical – not even a little bit.
Take a seat, grab your coffee and your Bible if its handy, and lets dig in together to see what God REALLY says about suffering. I’m taking on 7 key points where we can compare the teachings of the prosperity gospel side by side with God’s word, and see just how much they don’t sync up.
The Prosperity Gospel says: Rebuke Suffering
The Bible Says: EXPECT Suffering
1 Peter 4:12
Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as thought something strange were happening to you.
1 Thessalonians 3:3
…that no one be moved by these afflictions. For you yourselves know that we are destined for this.
1 Peter 4:19
Therefore, let those who suffer according to God’s will entrust their souls to a faithful Creator while doing good
1 Peter 2:21
For to this you have been called, because Christ also suffered for you, leaving you an example, so that you might follow in His steps
The New Testament is absolutely littered with references to suffering, especially if you dig in to the writings of Paul. (There’s a guy who did his fair share of suffering. )We’re reminded time and time again of the truth that suffering is to be expected for followers of Christ. When Jesus told us to pick up our cross to follow Him? He was preparing us for the reality that the Christian walk would in no way guarantee us “health, wealth, and prosperity.” Quite the opposite. Paul tells us in Thessalonians that we are destined for suffering, choosing a word that communicates the idea of the very purpose for which something was created – like a salt shaker is made to hold salt. As appealing as it is to believe that a life following Christ is one where we leave our troubles behind us, the truth of Gods word sheds light on a very different reality.
The blog has once again been eerily quiet.
There was such a year of build up to creating this site, with God opening doors I could have never ever dreamed and with opportunities coming together in the most providential of ways. It was amazing to experience how when you are willing to simply say yes to whatever and wherever He leads, the journey is beyond anything you can ask or imagine. It was all of the truths of “immeasurably more” coming to life and exploding off the page. It was magical.
And then right when the opportunities were most abundant?
HE PUSHED PAUSE.
If you follow my social media channels you will have likely seen the reason behind the recent silence on the blog. After 15 years of continuing health issues a surprising twist has come to light. Countless misdiagnoses and failed treatments and incredulous shrugs from doctors who couldn’t agree on a name for the symptoms that seemed to be multiplying more rapidly than ever all culminated in a unexpected identity for my captor:
With the key finally in hand to the mystery of my crippling illnesses, we set out to finally banish my issues once and for all, only to discover we had been dealt a double edge sword. This particular diagnosis, it would seem, is only a beginning to a very long road indeed. Treatments are difficult and uncertain. Doctors who are knowledgable of the condition are few and far between. Insurance companies all but refuse to cover any of it. The diagnosis isn’t so much an ending to this struggle as the beginning of a new one.
It’s been a whirlwind couple of weeks, but I’ll do my best to condense my overflowing brain in to something resembling a blog post.
Recently I was in Georgia for the 5th annual conference for the Pursuit Community (an amazing nationwide ministry you can read more about by clicking the link in the top of the “Friends & Sponsors” section in my sidebar.) As has held true year after year at this event, God showed up in incredible ways. This year’s verse ruminated on the theme of “a new thing.” I came to Georgia with open hands, ready for God to show me something incredible without my own constraints and expectations getting in the way, and yet I was still utterly blown away by what He revealed through speakers and attendees alike, all speaking the same messages to me over and over.
I felt consistent confirmation that God has laid a path before me that is uniquely my own. Sure, this industry is full of experts and mentors and plenty of well intentioned advice, but over and over He spoke plainly to my heart that His plan for me is a NEW thing: not a repeat of anyone else’s story. He hasn’t called me to be the next “so and so,” but rather to embrace the story He has written specifically for me. More than that though, He’s given me a calling that He created me perfectly equipped and suitable for in every way – not in spite of my weaknesses and struggles, but BECAUSE of them. His strength is perfectly displayed in my weaknesses, His story beautiful showcased in His faithfulness and grace to me each day. I felt confident that I don’t need to #hustle or knock down doors to make all my own opportunities, I need only to be ready to obey whenever He says to go, and be patient on His perfect timing. The Joy Parade is going to be exactly what He wants it to be exactly when He wants it to be it, even if I don’t always have an exact vision for what that is. Sometimes admitting we don’t have all the answers is the first step to something so much bigger and better than we could have imagined for ourselves.
There comes a point with most all chronic and incurable illnesses where you reach the stage of acceptance. You learn to let go of your unrealistic expectations and find ways to make life with your particular handicaps livable. You surround yourself with excellent supporters, you give yourself an extra serving of grace, and you make your own definitions for success.
And then sometimes there are days like today; days when you throw all that aside for a minute and take the bravest step of all: you let hope sneak in again.
Today I went to a new doctor. We looked over the history of everything thats been tried already, and then promptly threw it all in the trash. We went back to square one and allowed the hope of new options and answers to come alive. We made the choice to go back to the starting line with a new set of eyes and open ourselves up to the possibility that maybe, just maybe, we’ve missed something, or that medicine may have new answers to offer this time around.
And nothing could possibly be scarier right now than hope.
Acceptance is such a healthy phase when you finally reach it. So being willing to let it go, without any assurances that anything will come from it? Thats terrifying. Right now it feels like a huge step backwards – back to a time when my imagination ran wild with possible outcomes and worse case scenarios, when I was bounced from misdiagnoses to failed treatments and back again, and I had no way of knowing what the future might hold. Being willing to let hope in also means letting go of the comfort of having everything all figured out. It means giving up being settled in order to set out on a long and arduous journey – knowing full well that it may come full circle right back to where you started.
Yet that’s exactly what I’m doing. Letting go of it all because maybe, just maybe, there is something better out there for me. Maybe Im clinging to something so much less than I could have if I’m willing to try. And yes, Im fully aware that I might get the same answers, the same lack of solutions, the same diagnoses that will bring the same cycle of grief – all to end up back at acceptance once again. But that’s a risk I’ve decided to take.
So I dropped off most of my blood at the lab (ok not really most of my blood, but it sure felt like it,) and made the difficult commitment to begin the process of weaning off a medication that has been a huge part of my routine for a long time now, so we can start trying new options and see if theres a better outcome somewhere else. In typical fashion, this is an “it’s gotta get a bit worse before it can better” sort of thing. Coming off this particular med is a bit of an ordeal, with a complicated step down regimen and cross weaning process onto the other medication. The side effects of this process alone made me reconsider.
But ultimately, hope is never the wrong choice. I never want to get so comfortable in my acceptance of my condition that I stop being willing to consider Im wrong. Risk is scary, but apathy should always be scarier. It’s simply never time to completely give up; there’s always got to be room for the possibility of hope. And sometimes, on days like today, its time to let that hope out of its hidden corner and let it take the wheel. I have no idea where it’s going to take me, but I know I’m committed to finding out just how far this road goes and where it ultimately ends up, even if thats right back here at the beginning again.
Either way, I’ll know I saw this thing through. And thats worth it.
I dont think I’ve ever sat down to write a more difficult post. Or a more necessary one.
There will be no fancy formatting, no pretty pictures, and no perfecty designed pinnable graphic with a carefully selected quote from the writing. Just words, in their truest and most naked form, slowly trickling from my keyboard and taking their places is neat rows across the screen. I feel a bit like a singer who tells the band to put down their instruments and steps up to the mic with a single guitar.
I’ve missed you dear readers. Its been a long summer that somehow bled over into the fall and made it harder and harder to get back to business the longer I was away. In the beginning it started as Aidan finishin out Kindergarten and coming home for the summer. And for all the ways he has so dramatically grown and thrived this first year here (and I promise, I have an entire post coming down the pipeline dedicated solely to an Aidan update,) it had also grown really clear he desperately needed some hands on love and attention this summer. And so I stepped quietly back from the keys, temporarily let go of the thing I worked so hard to build, and trusted that God would reward the choice to put my most important job first for awhile.
It was a beautiful summer and Aidan is absolutely better off for that choice. But somehow in the crevices of my mind the lie started to creep in: you’ve lost your blog. You worked so hard and now you’ve burned out and fizzled into nothing. Your readers have all lost interest and left. You wrecked it.
Little by little the lie took root and the anxieties grew. It became a more and more difficult task to sit down and face that stark white page with nothing but a blinking cursor waiting for me to say something, anything at all. Even if I could manage to type some words, the reality of the editing, and the formatting, and designing graphics, and social media cross promotion – all the “shoulds” of a strong professional blog – it was overwhelming. The longer it went on, the more difficult a return became.
And then came the BIG curveballs.
Major flares of my health conditions. A schedule packed with meetings for Aidans IEP and other educational needs. Kidney stones. A double kidney infection. All sort of reasons to excuse myself from my calling and retreat to the couch defeated.
So there I lay, on that couch, right in the thick of the muck. And nobody wants to hear from somebody in the muck. No, we want a recovery story! We want our bright and shiny heroine to return from her struggle and tell us all about how it was and about the glory of it defeat. So I kept waiting for the victory to come, so I could be worthy to sit in front of these keys and speak to you once again, all bright and shiny and new and full of wisdom and DIY tutorials.
But the hits kept coming. And the muck kept stinking.
And somehow the calling kept aching. That part of my soul that says “Child of God I created you a storyteller. I formed you in your mothers womb with a purpose, and that purpose calls you to write, and speak, and share. You are a truthteller, no matter what other design you may try on or attempt to squeeze into or hide behind or even convince yourself you’re trapped under. You are still, at your core, what I created you to be. And you can’t run from that.”
So, dear readers, this is my postcard to you. Greetings from the muck. I’m here, not shiny, not new, and not entirely sure of how this season of life will play out. But Immeasurably More is still true: He still gives good and perfect gifts, Immeasurably More than whatever I could ask for or even imagine in the first place, even if its hard to see laying on this couch surround by perscription bottles and discarded piles of plans and “should haves.”
But there’s one thing I no longer keep on this couch with me: the lie that it would be better to share nothing than to share anything less than I’ve come to expect of these posts. That lie has been thrown right out into the trash. That lie has been carried all the way to the dump and incinerated.
This is the first post Im writing from my new couch office – a refurbished ipad, a special keyboard case to essentially convert it to a laptop, and soon there will even be a lapdesk. Im going to get back to the business of who I was created to be, because even covered in muck Im still that same creation. Its time to get back to the heart and soul of who I was created to be as an author. Its time to recognize that sometimes when that singer steps forward away from the band, and the lights go down, and we hear those first bare and naked sounds of a voice quietly singing out, clear and uninumbered? We hear with our hearts, we’re moved in our souls, and something magical happens.
Im ready to step up to the mic again, even if some of these songs have to be unplugged.
Greetings from the muck. I’ve missed you.