illness

On 2016 : Never Removed

I spent the afternoon reflecting on all that did and didn't happen in 2016, writing out my thoughts and answering probing questions. It was a painful year, no doubt.

From 2016's start to finish, I was undergoing treatment, unemployed, and living under my parents' roof. Any precious energy I had was on sleep mode, saved for necessary things like: showering, driving 45 minutes to see my counselor, and maybe going to church. I learned that chronic pain doesn't take a vacation—not even if you get away to Hawaii. (which happened.) I went to the Big Island to gain closure from my time in YWAM and move my belongings back home. My treatment leaked on the flights there, emptying not only the bottles but my finances and hopes for better health. The doctor said not to worry. He didn't know worry and I were close friends. After that trip, I didn't step outside for 7 days. I later learned "I haven't seen the sun" is a cause for concern.

On 2016 : Never Removed | erikaspitler.com

A friend encouraged me to fill my days with creativity, so I made a few attempts. First, I conversed with artists and entrepreneurs and podcasters on Anchor, learning from strangers. I then tried sending weekly newsletters which I fondly called Offstage Notes. It was a short-lived but fun endeavor. Moving on, I taught myself embroidery and hoped (for two weeks) to start a business named ThreadRest. I quickly learned these projects were either not for me or were pursued at the wrong time. In the end, I kept up with one creative attempt: my reading challenge. This proved to be life-giving, educational, and a way to pass the time. Some weeks, my only visit outside the house was to pick up my books on hold. Our librarians brought me smile after smile as they commented on my latest read. Literacy is a gift I hold dear.

On 2016 : Never Removed | erikaspitler.com

My parents continued to house me rent-free, helping me in ways that are immeasurable. I prematurely took a job delivering groceries and resigned before my first day. I was weak not only physically but spiritually. Our family visited churches. My mom and I talked theology late into the night. I stopped going to church regularly due to severe disappointments, forgetting humans are imperfect and I, too, am one of them. I grappled with my faith, clinging to hopes of healing or marriage or ministry more than my hope in Christ. It's shocking to see how I'd plastered my heart in selfishness and pride for much of the year. I cannot believe how merciful, forgiving, and loving the Father is to His children. 

On 2016 : Never Removed | erikaspitler.com

If you know me well, you're aware counseling was the best present of 2016. In every session with my counselor, I experienced God's grace and truth. She gave me the permission to grieve losses, and I did. I grieved all things big and small in categories of relationships, ministry, health, and opportunities. Shame would lessen and anxiety would disappear. Asking for help was never so beautiful. Together, we created goals for myself. The largest goal written on her whiteboard was learn to live with Lyme Disease. The daily goals? Look presentable, step outside, get in the Word.

On 2016 : Never Removed | erikaspitler.com

Some reprieve came in the fall. I spent almost a month away in California and Georgia thanks to kind friends and the kindest God. These three weeks were like a soul retreat—nourishing, affirming, and comforting. I began to dream again. I was ready for anything. The anything which followed in those weeks was a whole lot of no's from jobs I'd applied to, people I cared deeply for, and a body which acted up whenever it so pleased. It was a wild election season, several of my friends were in the midst of intense suffering, the online world was clogged with negativity, and devastation in countries and neighborhoods and homes would not cease.

I wondered why I wasn't given a heart of steel—wouldn't that have protected it from breaking over and over? What about those hurting in my home, city, the world? But if heartache and rejection brought me anything these final months, it was clarity.

On 2016 : Never Removed | erikaspitler.com

The epilogue for year 2016 reads: 

Darkness could not win me over, for I belong and will always belong to God. All 366 days, He carried me. He has been strengthening me for the journey, beginning with the restoration of my mind and emotions. He gave me the space to cry out, to ask questions, to stay put. He helped establish healthier routines. He confirmed my call to missions. He held me and my tears day by day by day.

Calvinism or Arminianism? Japan or California? Homeopathic or antibiotic? I sought and fought hard for my solutions this year. I don't have all my answers, but I have the Lord, and He is what I need. The failures and sins of my past, present, and future cannot remove me from His love.

It's a time of new beginnings—to allow God's Spirit to soften me, revive me, and empower me to not just live with something like illness but to love Him and others well in the midst of it.

Although this was a very hard year, it would be ignorant to look only at mine. I cannot pretend to know where you're at, just a few days out from 2016. I don't know what big regrets or big hurts you hold inside. I've told you my answers are few, so I will not try and give you something I don't fully believe.

But this I am sure of: God will weep with you and heal you and answer you.

Come on home.

On 2016 : Never Removed | erikaspitler.com

There's no cure. I see hope.

A few days ago, my dad and I discussed treatment plans and the decisions surrounding it. These conversations are unpleasant for me. I'm weary of reevaluating my health status so often. I don't want to be reminded of how painful these last few months (or years, even) have been. Yet to ignore this topic would be foolish.

Can we still afford treatment?
How much longer will you give it a try?
Is this even working?


When I resigned from my job and began this particular protocol in December, I imagined by mid-2016, I would see progress. I marked out a timeline for myself—fairly certain by the end of June I would be healthier. Just in time for my birthday.

Early this morning, I began to look at this situation rather plainly. It's necessary to grab views detached from my emotions. I can't deny the facts about this disease. It is what it is. Regardless of what my body or a medical report reveals, I pray I will cling to God's truth.

The facts say there is no cure for chronic Lyme Disease. And once treated, over 63% of people could still face debilitating symptoms. No one can promise me I will feel better on this side of heaven. Not by June 2016, and not in 20 years.

I've heard this before, but I guess I was hoping for a different story.

This road could be a lot longer than I ever expected. I could still be asked, "are you feeling better yet?" in five years. Or maybe by then, the question will be stale and hardly a topic for discussion.

In my efforts to rush ahead, I put terms and conditions before God. 

Lord, if this treatment works, I could focus on You more.
Lord, once I feel better, I will serve You in many ways. 
Lord, it would be amazing to be miraculously healed.
Then wouldn't others wonder at Your goodness?


Do your prayers ever sound like mine? As humans, we love to have the ideals portioned out like they're baking ingredients. We've got recipes in mind and measurements memorized. Our prayers often uncover whether we've put God to a timer, expecting Him to whip up a treat for us when we see fit.

June is approaching. My self-made timer wants to count down the days.

But this is what I know. The abundance of life (John 10:10) is not going to be found in regaining my health. Or the community I once had. Or money in my bank account. Or living on my own again. Or traveling overseas. If true life could be found in any of those ideals, I would be left out of something God has promised, making Him a liar. And He cannot lie.

David says in Psalm 25:15,

"My eyes are ever toward the Lord, for he will pluck my feet out of the net."

Turning my vision away from myself and off the calendar, God helps me see differently. He reminds me of the eternal life I have now (John 17:3) and of the future glory to come (Romans 8:18). He leads me into truth—guiding me through life's interruptions with no fear in His step.

I don't have to count down the days until a desired date, because I can start counting up right now. I count up God's goodness. I marvel at how He can accomplish much in this frail body of mine. His Spirit does the work, renewing me (2 Corinthians 4:16) and giving me the doses of daily strength I need. Unlike my bottles of treatment, He will never run out.

There doesn't need to be a healing visible to the eyes for me to prove or believe He is good. Hope is alive inside me despite the pain and the losses—how incredible is that? How incredible is HE?

The facts about Lyme Disease are real. I have studied them, and I know them. But I also know a truth which sets me free from those fearful facts.

When I look to the the cross of Christ, I see that my dream life doesn't begin once circumstances align to my liking. He is eternal life, and I know Him now.

Lord, help me keep focused on You today.
I will seek after You. I will serve You. I will see that You are good.

Seeing differently

Meet my invisible illness.

Blood Tests & Bed Rest

Everyone, meet my invisible illness.
Its name is Lyme disease.

I can tell you what to call it now, but I couldn't for over four years.

Naming illnesses are not as straightforward as picking out baby names. They are also not as fun. And unlike children, illnesses could last years without having a name carved out for them. Some people never receive a diagnosis. Some would rather not know.

I now know.

Today, I want to share with you a peek into my health timeline followed by a FAQ.

I feel tender writing facts and details about physical health as it opens up a world of opinions, thoughts, and suggestions. I kindly ask you to refrain from giving advice in my health situation. Please know my hope here is not to gather sympathy or pity. In sharing my experience, I simply want to provide support to anyone struggling and clarity to those who are curious. With that being said, I always LOVE hearing your stories and questions—so please reach out!

If you don't understand everything or don't know how to relate, that's okay! Illnesses can be an awkward subject to approach, and none of us like to see our friends suffering. It's okay to admit that. Your prayers and encouragement are always appreciated.

Thank you for your love and presence.

As a kid,

I was healthy, athletic, and hardly knew what a cold was. Both my parents promoted a wholesome diet and lifestyle while growing up. The memories I have from my childhood are vibrant and carefree, threaded together with bright hues and ballet ribbons.

When I was 10 or 11, I was diagnosed with hypothyroidism (underactive thyroid). Nothing changed except my blood was often tested and I took medication—routines which still continue.

During a geology class in 2010,

I looked at my hands and thought I'd turned into a vampire from Twilight. And I don't even believe in them! My extremities were stiff, icy, and had turned a shimmering gray / blue / white. Later it was discovered I had Raynaud's phenomenon (reduced blood flow), occurring secondary to the hypothyroidism. 

That year, the thyroid symptoms began to catch up with me, and it was harder to have the stamina to dance 30 hours a week. None of this was life-shattering, just something I needed to adjust to.

The following year,

I stopped dancing due to injuries and could no longer afford college. Life took a surprising turn, and in April 2011, I moved to Hawaii and joined Youth With A Mission. My time with this missions organization was pivotal in my walk with the Lord. He captivated my heart and placed me on a firm foundation. This is worth mentioning, as I believe God was preparing me for the challenging years ahead.

In July, my ministry team took a detour to a farm in Connecticut before heading to Mozambique for three months. This is where Lyme took a liking to me. And I had no idea.

Once in Africa, I was constantly exhausted, dehydrated, and lacking nutrients. I didn't take care of myself. One night while on a trip in the bush, I got sick with a virus and my stomach was angry for weeks. There were flu-like symptoms. I had worms in my feet and stomach.

Yes, it's all as gross as it sounds.

The most jolting moment was on an August morning, when I woke up in a fog. I had lost memory of Bible verses and what we'd done that week. My sharp memory was something I'd taken pride in, and it became dull.

That fall, I returned to the states and visited doctors. Despite my memory loss, stomach troubles, increased fatigue, and weight gain, "nothing was wrong." I thought I could just rest it off. I blamed it on the travels and my thyroid.

From 2012-2014,

I was all over the map geographically as my health stayed without answers. Because of my health's unreliability, plans were constantly uprooted.

I returned to missions twice. I was on bedrest. I tried counseling. I tried diets. I wrote two resignation letters to jobs I truly loved. I made friends and lost friends. I moved. I experienced heartbreak. I began writing lots. And I cried out to God. 

Appointments felt useless.

Symptoms piled up. Blood test results were negative. They considered this as fibromyalgia, chronic fatigue, or depression. Doctors suggested antidepressants to help with my discouragement and walked me out the door. We were all baffled. 

Something was obviously not right physically, but I couldn't force my body to prove it. It's not uncommon to be told, "but you don't look sick!" or "you look so good no one would ever know!" But I wanted people to know. I wanted to feel believed, seen, and affirmed. Insecurities soared, and I believed many wrong things regarding my identity. 

Late 2014, after a series of unforgettable doctor visits and many times of prayer, I began to research for myself. I came across Tired of Lyme and also watched Christa Vanderham's story. It was surprising to find so many symptoms aligning, but I put it to the side.

Hope Heals

While visiting home in Jan. 2015,

I woke up with a distinct memory. There had been a rash on my chest. Where was I?! And when? It came flooding back to me. I acquired a rash while staying on the Connecticut farm in 2011.

If you're not familiar, Lyme disease is a bacterial infection transmitted through a tick bite. In some cases, the bite is characterized by a bullseye rash. It was named after a town with children afflicted by it in Lyme, Connecticut. Though I wasn't about to diagnose myself, the possible connections seemed interesting. 

I'd been tested for it before, and received a negative result. There are many people who have experienced the same, as the typical diagnostic tests for Lyme can be insensitive. I wasn't sure what to do with this information, but I continued to cry out to God for His leading.

Months later, my prayers were clearly answered. I got connected with two individuals who had Lyme disease and was referred to doctors who specialized in this.

For the first time, these doctors listened to my every word. They wanted to know the symptoms, the history, and everything in between. Both emphasized that something was very wrong—words I'd not heard in an appointment before!

In December, after months of the symptoms worsening and affecting my ability to work, I resigned. I began receiving treatment the same week. The protocol I receive is not to treat chronic Lyme disease but to treat me, as a whole person. This homeopathic approach has moved mountains for a dear friend's recovery, and I've been believing the same for me.

Treatment Protocol

FAQ—

So, what happens next?

That's a great question. And the answer? I don't know! 
I've been on treatment for four months and have not seen notable improvements just yet. This is something which takes much patience, commitment, and trust.

Being out of work and living at home with my family has been a stretch. I enjoy accomplishing tasks, traveling the world, being able to provide for myself, and actively serving others. This time of rest and recovery has forced me to slow down and get a good look at where my hope is found.

Most days, I do feel sick. I wake up in pain, and I go to bed in pain.
But most days, this no longer controls me, ruins me, or limits me.

I believe in a good God. I believe in a God who heals, protects, and redeems. When I feel hurt or misunderstood because of this illness, He cares well for my heart. And even when I sin through anger, jealousy, slander, or much more, He lavishes forgiveness and shows me a better way.

All I want now and next is to love God and others well, no longer letting what the enemy meant for evil stealing a second of this life I've been given.
 

What are your symptoms?

It's a long list! Don't let it overwhelm you.
I've listed for you symptoms I've experienced, but I don't feel them all at once. 
My main complaints now would be cognitive troubles, fatigue, and physical pain.

  • headaches
  • memory loss
  • forgetfulness
  • brain fog
  • dizziness
  • slurring of speech
  • inability to recall words
  • extreme fatigue
  • trouble sleeping
  • heart palpitations
  • moody
  • joint pain
  • muscle pain
  • severe neck stiffness
  • enlarged knuckles
  • arm numbing
  • hair loss
  • puffy eyes
  • eye floaters
  • blurry vision
  • sensitivity to light
  • rashes
  • depression
  • weight fluctuation
  • poor circulation
  • shortness of breath
  • digestive problems

My friend / family member has an invisible illness.
How can I support them?

Each individual is different. Their symptoms, experiences, preferences, love languages, communication styles, limitations, and needs will vary. Keep this in mind.

Chances are, your friend or family member may feel like a burden. They might feel pressure to conceal their struggles, and you might feel pressured to have the perfect response. Depending on the person or type and length of the illness, a chasm could be created in your relationship if expectations are not lovingly communicated.

Dr. Brené Brown has a brilliant 3-minute talk on empathy I highly recommend listening to. It's so meaningful when you enter with this person in their pain. Yes, even when you don't understand. It's a vulnerable choice, but you'll be able to connect deeper.

There are many creative ways to show them you care. 
Here are a few simple ways to start:

  • pray for them
  • tell them you love them
  • validate their pain
  • remind them they're seen
  • let them know they're not alone
  • call, visit, and spend time with them
  • share truth with them
  • give gift cards, offer to make meals, watch their kids

Invisible in illness?

If you have depression, mental illness, infertility, lupus, lyme disease, fibromyalgia, chronic fatigue, arthritis, or any other invisible illness I did not listI am so very sorry. I know what it is like to carry around a weight that most people cannot see. That feeling of being constantly misunderstood, isolated, or angered? I get it. I have been there. And in many weeks like the last, I am still there. But I am fighting for perspective.

It's been about 180 weeks since my health began to decline, and I still don't know what actually is amiss. Chronic, undiagnosed, invisible. I am finding it is not as uncommon as I thought. (well over 100 million in America alone have an invisible illness.) 

Doctors have reviewed my negative test results and leaned forward in their chairs to tell me, "Ma'am, there is nothing we can do for you." Some have alluded to me making up the symptoms because they believed I craved the attention. One doctor told me he would "pound anti-depressants" on me during my next visit to help me cope with the frustration of not finding an answer.

The pattern has remained the same. They see nothing, so they give up. In my case, the illness and its diagnosis are both hidden.

It makes me feel crazy.

IMG_3427.JPG

I live with an unwanted illness.

But I also live wanting a pinpointed diagnosis so I could move forward with a treatment plan. So I could feel validated. Oh, to have an answer! A result of some kind!

I've often imagined the relief that would wash over me as I finally learn what the heck has been going on. To me, an answer would somehow prove this is all real. It would legitimatize the symptoms and my constant justifying could then cease. At least that's what I imagine.

This illness crept into my life summer of 2011 and has since bulldozed through my once-neatly-packaged views on God, relationships, purpose, and even myself.

It might be invisible in nature, but its effects have greatly impacted me as well as those close to me. My selfish and prideful ways have never been more highlighted than in these 180 weeks or so. I never knew self-pity could taste so gross or that I could be this headstrong in my distorted game of negativity. For something so invisible, such deep issues have surfaced.

Perhaps it sounds nonsensical, but somewhere along the way, I placed myself under the label of "sick girl."  In my naiveté, I allowed the lies to grow and confirm the preposterous belief that invisible illness meant invisible girl.

I thought I was doing myself and others a favor by isolating my emotions, thoughts, and even physical presence. Then came Christmas break in Virginia two months ago. I visited my best friends whom I had not seen in about a year and a half. During this trip, my cognitive symptoms experienced a flare up, which means conversation, comprehension, and retaining information expended the little mental energy I did have. In addition was the usual fatigue and chronic body pain which made me feel like I had piggybacked an elephant all night long.

I was only beginning to pull out of a long, emotional funk. Just the thought of inviting them into this mess freaked me out. I sat in the passenger seat as my best friend drove us from lunch when a certain thought riveted me. Maybe I should tell her. Maybe I should tell her what it's really like for me to be sick. I beat myself up for a good while, clenched my hands, and finally mustered up the courage to share. I had predetermined that even best friends wouldn't really care to know. If they did, wouldn't they have said something first? It turns out, she did care and has cared. She just needed to be guided into how I felt so she could try her best to understand.

As people, isn't that what we desire? To be recognized and embraced even in our mess? Whether it's illness, a job loss, an addiction, death, heartbreak, or whatever elsedon't we just long to be assured that we have not been forgotten? That what we experience matters? 

Although my best friends haven't experienced this themselves, they've been through plenty of painful situations which stole their joy, masked their identity, created feelings of shame and isolation, and kept them from speaking up.

We have suffered through our silences.

What I was told that afternoon meant volumes to me. She completely validated my illnessI was not crazy after all. Following that, my friend sweetly said, "Erika, I don't love you because of how eloquent or fun or intelligent you are. I love your heart and who you have been all of these years. It doesn't change." 

I don't want people to only know me from a distance. I want them to come close. I crave for them to. It has been a painful process to see the lies regarding my worth uprooted and to plant seeds of truth instead.

Like I mentioned earlier, just this week I felt misunderstood, isolated, and even angered. When I find myself feeling that way, it's usually because I haven't opened myself up to the truth or to the vast graces of God and the way He moves through His people. 

Yes, my sinful ways have never been so highlighted as they are now. But neither has the grace of God. The way He extends His love towards me is something I feel I do not deserve. His grace, His gift. The way He tells me I am enough leaves me in awe. He notices my every need and cherishes me more than even the best of friends could. I've never seen this part of His heart more visibly than now. He is whispering,

your illness may be invisible, but you are seen.

And maybe you need to hear that, too.

Through your angry days, your hard days, your painful days. Through the blood tests, treatments, medical bills, lost relationships and many "but you don't look sick" comments.

Through all of this, you are seen. You have not been forgotten. Your every need is fully known by God, who so desires to empower you with His strength. 

May you be open and allow His whispers of truth to fall afresh over your heart. And most of all, may He, the God who created you and your beautiful body, restore you wholly and completely.