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 list — I 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. This is a part of my journey:

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.

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I live in this strange tension of not wanting an illness and yet hoping for one to be pinpointed so that I could move forward with a treatment plan. So I could feel validated. Oh, to have an answer! A diagnosis! A result of some kind! I have often imagined the relief that would wash over me as I finally learned 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 favour 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 my 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 most days so she could try her best to understand. As people, isn't that what we so desire? To be recognized and embraced even in our mess? Whether it's illness, a job loss, an addiction, death, heartbreak, or whatever else  don't we just long to be assured that we have not been forgotten? That what we experience matters? 

Although my best friends have not experienced this for themselves, they have been through plenty of painful situations which have stolen their joy, masked their identity, created feelings of shame and isolation, and kept them from speaking up as well. We have suffered through our silences. What I was told that afternoon meant volumes to me. She completely validated my illness  I was not crazy after all! Following that, she 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 is usually because I have not 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 have 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.

Some helpful links:
Psalm 139 MSG / You Don't Miss A Thing / butyoudontlooksick.com

This is the first of three posts closely chronicling my journey of finding perspective amidst illness. If you are reading because your friend or family member is ill, I hope this may bring greater clarity. If you have an illness yourself, please know I would love to hear from you, join in prayer, and link arms as we move forward in this together. Thank you for stopping by. xo

Dear Jacob: Don't Stop Looking

Dear Jacob,

This morning at 9:45, I stepped out of the prayer room and looked beyond the balcony. I am used to shuffling my feet from one place to the next, but this time I decided to stop. I took in as many sights and sounds as I could in my three minutes of spare time. I really looked. 

Do you know what I saw? I saw plumeria trees with missing leaves, jet skiers in the ocean to my right, palm trees taller than any Lego tower ever created, and window panes reflecting the sun at the perfect angle. And what did I hear? I heard birds warbling, a speaker passionately teaching a class of missionaries, and lawn mowers chomping up campus grass. Getting to sort through the different scenes around me was a blast. 

While taking in my surroundings, I began to silently cry. I know you have seen Sissy shed tears many times so it probably does not come as a surprise to you. I don't appreciate what God has created nearly enough. You and I have been given senses the ones you learned all about in a homeschool science class and they are a real gift. They allow us to enjoy people and food and nature and much more. I think we forget that many times. I love getting to hunt for beauty around me and hold it closely. 

I am sure it is different for ten year old boys. But I know God cares so much about you that He has created things for you to enjoy, too. What are those things for you? 

On my walk to the coffee shop where I am writing this, I was thinking about the timeline of your life so far. You have already moved five times in your ten years here. Unlike some other kids your age, you have been exposed to a constant change of surroundings and surely have felt the impact of transition. This has caused you to see a lot, and that is really special.

Jacob, you see things through God's special glasses. Think of them like hi-tech spy gadgets. You see the good all around you in people and in situations. For years now, you have been telling me how beautiful I am no matter how I feel or what I think I look like. My roommate April would call that "calling out the gold" something you do really, really well. 

Don't stop looking, buddy. 

Whether you're detecting cumulonimbus clouds on a Tuesday or listening to Bible verses playing on my purple boombox, keep learning. Keep track of what catches your eye, what you want to know more about, what you hear and what means most to you. At ten years old, go wild in your dreams with God. Use those eyes to look around for the people who need a friend. Be the one who knows their favourite trading card and frozen yogurt topping from Menchie's because you are the one who pays attention. Believe the best about them and give them that high five when you sense they need one.  

Our surroundings change, but there is always something we can do, learn, say, see, or enjoy. You know that Sissy sometimes struggles to remember things. It is a symptom of the sickness I have. So I tell people I collect memories and I hold everything closely by writing and photographing. On the hard days, it helps me remember what I have seen and heard and been surrounded by. It reminds me that God is a good, generous Dad. He gives us many opportunities to find His blessings. It is like a lifelong scavenger hunt that we have been invited into. We will always find the good as long as we are seeking after Him. 

So keep looking, J. Look long and hard. You have been given special eyes to see the way bugs crawl and Legos interlock and people need love. And in my opinion, they are some of the coolest eyes you can have.

I love you always,
Sissy

"I AM" | a portrait poem

This week at the journaling for healing class, we introduced a simple way of self-identification and self-commentary. It is intriguing what we can discover about ourselves by following a basic structure of a portrait poem. Co-leading this class and doing the exercises alongside the women has been a very life-giving experience for me. I am learning right with them. Getting to hear the truths, the questions, and desires of each person is always an honor. 

The poem below is what I scribbled in my journal during Tuesday's 20 minute in-class assignment. I was surprised by what came from that time. Although I wrestled to find characteristics I believe I am, victory was stamped onto my heart as ink touched the page, making the final statement. When I lifted my left-hand up from the journal, I smiled, because this is the woman I am. The woman God has created me to be. 

i am. . .

I am a tender-hearted and brave woman.
I wonder why they can't find answers.
I see a life without physical pain.
I hear the laughter of a life fully lived.
I want to live with that freedom now. Because I can.
I am a tender-hearted and brave woman.

I pretend I have this all figured out sometimes.
I feel an expectancy rising in me as I know there is more.
I touch my body swollen by inflammation and am reminded.
I worry I will make too many excuses because of illness.
I cry when I experience the endless grace of God even in this.
I am a tender-hearted and brave woman.

I understand nothing is wasted.
I say God is still good. Because He is.
I dream of dancing again to tell a story of redemption.
I try to choose thankfulness no matter how much it hurts.
I hope of a day where I can see the world transformed by Love.
I am a tender-hearted and brave woman.