When Doctors Hurt Instead of Heal

when doctors hurt
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.
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Thoughtful Gifts for the Chronically Ill

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!)

Heartfelt Gifts

Caring Crate Subscription Box ($39.95 per month, or discount if ordering multiple months)
caringcrate

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)
spoonnecklace

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.

 

 

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Mama Has Lyme

mama has lyme“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…]

The Prosperity Gospel and the Truth About Suffering


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.”

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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.

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When God Pushes Pause

 

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:

LYME DISEASE

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.

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Conferences, Canes, and Chronic Pain

The Winshape Retreat, Location of the Pursuit Conference

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.

Mary Marantz at Pursuit Conference

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.

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I’ve Been in Pain

946770_10153542624579818_1936731990056128860_nIt’s been a long time since sharing my words in this setting. Too long. Its been an awkward enough pause to address it, but doing so is easier said than done. Some bloggers would suggest I call it a “sabbatical.” That’s really just a cop out at this point. Still others would counsel to have me point to my behind the scenes projects to show that I’ve been “in demand” and the brand is still thriving. And yes, I’ve been working furiously on the book and lining up my 2016 speaking engagements, but it’s certainly not what’s kept me away.

Here’s the unglamorous and totally truthful reality:

I’ve been in pain.

Some of it is physical pain. Many of you know I suffer from a debilitating pair of chronic health conditions called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Fibromyalgia. Winter is the hardest time of year for both these conditions, as cold and flu season hit with a vengeance and cold weather is a known trigger for additional fibromyalgia pain – especially now that we’ve left mild CA for a state with an actual winter. We even had our first ever snow this year. The pain has been harder to tolerate than I’ve been used to, and our medical insurance situation last year left me unable to pursue any real forms of help. I’ve been fairly open about these issues on my social media accounts, and have appreciated the wonderful support Ive received from both my readers and and from fellow members of the spoonie community. And it would have been easy to enough to leave it there and accept all the good wishes and understanding emails of encouragement. But that’s not the whole truth…

I’ve been in pain.

I’ve been neck deep in pain that was difficult to admit to myself, let alone to anyone else. It’s a pain I’ve tried to rationalize myself out of, explain away, and stifle down it hopes it would disappear on its own. But as with most pain, it really doesn’t work that way. It’s continued on as this persistent ache, popping up at the most inopportune moments and gnawing away at my ability to ignore it. It’s not going anywhere, and the more I attempt to ignore it the more aggravated it becomes.

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I’ve been in pain.

At the beginning of 2015, in the midst of our multiple months of unemployment, my husband and I discovered we were very unexpectedly pregnant. It was quite the shock, and I would lying if I said it didn’t take some time to used to the idea. It was literally the worst possible timing, but it was far from unwelcome. We felt blessed to be experiencing the possibility of another miracle baby, one we had been discussing for some time but weren’t quite ready to take the leap to try for yet. That baby was a shining light in the middle of a dark season, a much needed anchor of hope to ballast us in the midst of so much uncertainty.

And then, after a longer than usual ultrasound with the nurse, the doctor said those horrible two words.

Not. Viable.

This marked the 7th child that we wont meet until eternity. A 7th precious little one with no birthday to celebrate, no future to plan.

I’ve been in pain.

12342486_10153485769759818_246129569753746655_nSoon after the loss,  my closest friend was blessed with her own unexpected surprise: a 4th little one to join her beautiful brood. It was a joy I admittedly have struggled to untangle from my own sorrow. The happiness I feel for her is authentic, but it’s difficult not to feel the pain of the could have beens. Up until now all our boys have been perfectly staggered in age. If I had carried my most recent pregnancy to term, this trend would have continued, but with the final pair being the closest in age of the bunch. We would have experienced our first pregnancy we’d actually get to do together. Watched the boys grow together. Done it all together.

I’ve been in pain.

Perhaps the hardest part of miscarriage is that the world around you goes on, and you carry no visible scar to help legitimize your pain. There isn’t a label such as “widow.” There is no grave marker to show. There’s no words to properly explain the gaping hole you know you’re walking around with but simply can’t find a way to show. You’re seemingly alone in it. – and no one knows, or they’ve all but forgotten.

I’ve been in pain.

They say, “time heals all wounds.” Has this ever really been true? If you leave a gaping hole in your leg untreated and wait for time to remedy it, does it really heal? Don’t you usually end up with gangrene? Why have we been taught to believe any different with invisible wounds? Why do we beat ourselves up when our pain doesn’t heal according to some fabricated timeline we’ve assigned ourselves? Why do we feel the need to limit the reaches of our grief? And how can we ever find healing for wounds we are so unwilling to admit, let alone treat.

I’ve been in pain.

1237591_10153541449494818_9191476745620302457_nMy best friend welcomed her 4th little guy into the family a couple weeks ago. He’s beautiful: perfect in every way. And with his birth, I was finally able to admit out loud to my husband for the first time whats really been paining me. Maybe it was the first time I was truly able to admit it to myself. I miss my baby. I miss what might have been. I ache to have a photo, or a birthday, or even a name for this perfect little person I haven’t been able to meet.

I’ve been in pain.

Perhaps finally admitting it is the first step to real healing. It stings like mad, but most wounds don’t heal themselves. And I refuse to ignore this one any longer.