Wednesday, July 18, 2012

In Which I Explain the Chronic Illness I've Never Explained

Today I felt the lymph nodes in my neck and, for the first time in 23 months, they weren't swollen.

My eyes widened with surprise at the discovery, and I felt my neck again, gently — doubtfully — rubbing the skin below my jaw line.  A smile slowly spread across my face as the realization settled down deep, and then I cried thankful tears for this neck that feels so foreign.

For two years my body has felt like a stranger's.  Chronic illness has made my usually agile and energetic body weak and frail, unrecognizable.  In the first stages of illness, I'd fumble about with this alien body, regularly running into things, dropping dishes, and jumbling my words.  And you know how familiar smells can trigger memories? That stopped happening after I got sick.  This foreign body of mine didn't recognize smells from my past, so they couldn't trigger memories.  I missed that nostalgic phenomenon.

And now, my body feels like a stranger's for a different reason.  It's healthy.  At least my throat is. My body still has a lot of work to do on the cellular level in order to repair organs and glands so my systems function healthily again. But now, at least, my lymph nodes are finally free to rest, after fighting an infection for 23 months.  I could keep crying.

I know I'm not out of the woods yet.  As I recover from surgery it's still hard to swallow and talk, and I'm wiped out.  My doctor thinks it will take six months to fully recover from surgery and rid my body of the toxins from my infected tonsils. But today I am hopeful that I will recover from the last two years' illness, and live normally again.

I've talked about this journey a lot on here as I chronicle my life, and everything I write about walking with Jesus has been influenced by the suffering of chronic illness.  I realize, though, that a lot of you don't know what's been ailing me these last two years, so that some of my posts must seem a bit oblique.  I'd like to take this post to explain what's been going on the past two years, so you don't have to play the guessing game, and so you have a clearer picture of the context within which I write.

The difficulty with describing my illness is I haven't been battling something easily definable.  We haven't found a label that means something to most people.

What I do know is that getting chronically ill can be like baking.  You start out with ingredients: eggs, flour, sugar etc. and then you mix them together to make something.  You could make any number of things—cake, cookies, brownies—with the same few ingredients.

The same is true of health problems.  I started out with a series of isolated health problems that, like ingredients, could turn into a number of different, definable illnesses when combined.  My analogy breaks down quickly of course, because life-long health problems really shouldn't be compared to delicious baked goods, but I've been on a food kick this week, so bear with me.

For the first year of illness my doctor and I worked to discover as many 'ingredients' as possible. We were able to identify the 'eggs', 'sugar', and 'flour', but we didn't know how they were coming together and what they would make.  We were certain, however, that they would come together and create something life-long if we didn't try to isolate and eliminate each of the ingredients so that 'baking' wasn't even an option.

To clarify, let me explain the 'ingredients' we've discovered.

1. A weak immune system.  

For years I had adrenal fatigue.  This is fairly common among Americans, especially women.  Our adrenal glands create adrenaline so we have energy, bolster the immune system, influence hormonal balances, and play a role in regulating blood sugar.

Stress, busyness and physical exertion cause adrenal fatigue.  My life was typified by all three for too many years; thus, my body started to go haywire.  The most notable of the changes was my ever-weakening immune system.  I was often sick, and always exhausted.

2. Emotional trauma.

A lot of you know I was engaged to be married right about the time I first showed signs of chronic illness.  Just over a month before my wedding I had to break off my engagement. It was shocking and horrifying. Both my body and soul keenly felt the 'death' of the future I'd planned with my fiance.

3. The Epstein Barr Virus (EBV)

Normally the EBV throws people in bed for several weeks, but they get over it and move on with life.  In my case, it caused acute infection twice, in a five month period, and threw me into bed for years.  The second round of infection, which began just weeks after I recovered from the first round, was especially vicious, and catapulted me into another year of infection, debilitating fatigue, tonsillitis, body aches etc. before I slowly started to show very minuscule but measurable signs of recovery.

Although quite common, the EBV can be fatal. And once the virus is in your system, it's always in your system and can rear its ugly head at any time. In my case, it wreaked such havoc on my already weak body that, when I finally discovered a naturopathic doctor (traditional doctors were unable to help me), my spleen and adrenal glands were barely functioning.

"My girl," my doctor said after the first round of tests, "you are very, very sick."

It was a scary time, and it's impossible for me to put words to feeling so sick. I keep trying so I can invite people into this, but it's too hard. There's nothing I'd ever experienced as a healthy person that could come remotely close to helping my pre-sickness self understand this kind of sickness. The combination of my weak immune system, emotional trauma, and recurrent mononucleosis made it so that almost every week I woke up with a new ailment. Other organs weakened, other systems malfunctioned, other viruses settled into the tissues around my spine.  The virus tore through my system like a hurricane, affecting every system. 

Studies indicate that these three 'ingredients,' when combined, can cause multiple sclerosis, fibromyalgia (a.k.a. chronic fatigue), and lymphoma, to name a few of the more common illnesses.  For two years we've fought to ward off these illnesses by trying to strengthen the affected systems through supplements, diet, rest, massage, and chiropractic treatment.

We noticed, about a year and half into this process, that, although I was slowly regaining strength, I continued to have chronically infected tonsils.  My research revealed that sometimes tonsils can continue to contain the active mono virus, even when it is dormant in the rest of the body.

I suspected this was the case with my tonsils, and wondered if they were impeding my full return to health.  The return of my lymph nodes to normal after my tonsillectomy seems to verify my theory that they contained the active mono virus, although only time will tell if their removal allows a complete recovery.

Which brings me to the present.  In the weeks preceding the sinus infection preceding my surgery, I felt like I was functioning at about 70%.  This was a marvelous improvement from the rock bottom, I-can-barely-get-out-bed state I was in for so long.  I've had to be off my supplements this last month which has set me back a bit, along with the surgery.  It's been a long month of being in bed, but I'm hopeful.

I hope that my life continues to return to normalcy, to the extent that we eliminate all of the 'ingredients' (I'm hopeful that nothing has already been 'made' from them), and I don't write about my health problems on here anymore.  Whatever the case, I know that the losses I've suffered the last two years have forever changed me and my writing, because when you know Jesus loss is always transfigured into gain.

I guess this is why I can look back on the last two years and, even as I shudder and gulp big, I feel thankful.  Thankful that God uses brokenness and frailty to glorify his good and holy self.  Thankful that his glory is our greatest good.  Thankful to be grafted—sickness and all—into his plan to redeem the nations the way he's redeemed my life, and my pain.

I hope for health, but I wouldn't change a thing these past two years.  I've known God's grace in ways I wouldn't have had I not been alone, confined to my bed for so long.  And his grace is enough.  Always enough.

Thank you for walking this journey with me,


© by scj


  1. Sarah, I resonate with your last paragraph. His grace is always enough!!! It is beautiful how He redeems everything. I am hopeful for you and healing for your body. How encouraging to have your lymph nodes not swollen! We are so glad He has led you through this journey and has preserved your life. We continue to pray with you for full recovery in every way!!!

  2. Yes, Sarah. Thank you for your witness of pain and God's faithfulness through it. I appreciate how you write that you will never quite write the same, because you aren't the same. He continues to change us and use us.
    Praying for whole restoration!

  3. Anna,

    He preserves and protects, and makes his presence known. It all makes me even more excited for heaven one day. :)

    Thank you for your encouragement, and for praying with me on this journey.


  4. Dayna,

    Thank you for your encouraging words. It is marvelous to see the ways God uses difficulties to renovate our souls. The greatest evidence for the resurrection of Jesus that I've ever seen. :)

    Thank you for your prayers!


  5. Sarah, so glad you are feeling better! your post reminds me of this quote I ran across in a short story by Tolkein (Leaf by Niggle):
    "Things might have been different, but they could not have been better."

  6. the sense that God uses illness to do some great things. I can see His hand in my life too and I'm so grateful He "interrupted" my life to give me a truly better way of living.

  7. Macy!

    Thank you for sharing this quote. I love it. I think something along these lines almost daily. I do see that, although the last two years have been the worst years of my life, they've also been the best because God has given me a 'better way of living'—he's made me more human, more myself. Experiencing the Kingdom paradoxes is such grace, as hard as it is.

    Praying for you this morning as you, too, work toward health.


  8. I read a fairly recent post from you on Soulation today, and now just read your blog. I have met many women who have experienced emotional trauma from relationships and gotten sick with strange illnesses. I got sick as well, having a weak immune system, a separation and now a divorce, and it took me a year to recover, and I am now having to recover in other ways. I don't know what it's like to be that sick, but I have close friends who have chronic sicknesses that doctors can't figure out. It's hard to live life well, let alone sick, and I admire them and you. Thank you for blogging about your journey. I read your post on how well you are feeling! Congratulations! Your story makes me smile and is very encouraging!

    1. Dear Anonymous,

      I am so sorry to hear about your illness and divorce. A year is a very long time to deal with illness And what a burden it is to carry the sorrow of a broken relationship and the loss of a healthy body. I'm thankful Jesus wants to carry the burden with us.

      I'm bowing my head right now to pray for continued healing of body and soul for you.

      Thank you for sharing, and for your encouragement.