Some months ago, I was diagnosed with a chronic “invisible illness” to which there is currently no cure. For now, it’s called “Myalgic Encephalomyelitis” and Chronic Fatigue Syndrome (ME/CFS).
It is referred to as an “invisible illness”
because on the outside it can look as though nothing is wrong. High functioning patients have good days and bad and can often mask or push through symptoms long enough to function “normally” for a short time between “flare-ups.” There are also no bio-markers for diagnosis so science has a hard time “seeing” it, yet it is a very real and very debilitating disease.
I’ve been reluctant to share this side of my story on the web. Like most of you, I’m a fan of mostly sharing the “good stuff.” That’s not wrong, but it can be misleading when so much of my daily life has been greatly altered by this disease. I’ve willingly shared in person with several people, but I’ve resisted “putting it out there” online. I’ve realized that fear has largely driven my resistance to share. Fear of letting the “cracks” show. But I feel a deep conviction to be transparent about my chronic illness, not to clamor for pity or attention, but to share a part of my story that God is using to deepen my faith and teach me true humility and dependence on Him.
In that way, having ME/CFS is actually the one of the BEST parts of my story, even better than all the “good stuff” I post, because through my “cracks” and weaknesses, the power of the God I serve is piercing through so much more beautifully, strengthening me toward the things that matter eternally, and hopefully pointing others to where true strength and hope is found in Christ Jesus.
In sharing this, I also hope to help bring awareness to an illness that is greatly misunderstood, largely unrecognized in the medical communities, more prevalent than most people realize, and in dire need of funding for research for treatment and a cure. The short trailer below is from a documentary called “The Forgotten Plague”
which is free to stream on Amazon prime and gives a glimpse of what ME/CFS is and can be at its worst. By God’s grace my diagnosis is not yet as severe as some of the folks in the documentary.
My aim is not only to bring awareness to my disease, and to encourage other’s who suffer from chronic illness, but
most importantly, I want to perpetuate the message of HOPE that this, and all suffering in the path obedience, is NOT meaningless (as I am prone to think on the hard days). God has ordained a purpose for pain. Our suffering is working for us an eternal weight of glory. I’m praying that He will not let me waste my suffering
, hiding my weakness from the world out of fear or shame. I am asking instead that I would be like the bruised reed, bent by the wind but not broken, even joyful in my weakness!
I pray that my heart would be wide open to how He would use this vessel for His glory. (https://www.youtube.com/watch?v=qyUPz6_TciY
A couple of weeks ago I went back into the studio to begin work on another collaborative project with Full of Eyes.
I woke up in pain the morning of tracking. I was “flared-up” and feeling flu-like, achy, fatigued, and foggy-headed and still unable to sing well due to a stubborn 6 week respiratory infection. I felt frusterated and limited. I wasn’t able to accomplish all that I wanted to that day in the studio and I was discouraged. The next morning I was even more fatigued and achy (payback for the exertion the day before). I had to lay down throughout the day in-between the demands of home and kids. I felt guilty for not being able to give 100% to anything. I began to doubt God’s purpose in the pain. I began to question weather his promises were true for me.
Is God taking away my voice? My ability to be a capable wife and mom? Is He taking away the gifts I thought He was calling me to use?
The next day I found his answer in an email from a young woman I’ve never met who has a similar invisible illness and also happens to be a musician. She invited me to collaborate with her on an upcoming project which I believe will further the gospel in profound ways through the Psalms. Now, I may have neatly summed up that encounter just now, but don’t let that minimize the beauty and wonder of what had happened! In answer to my fears and doubts, God gently and patiently lavished his love and provision! Not only in giving me another opportunity to sing His truths and use my gifts, but also in the blessing of making a new friend in the faith with whom I can truly empathize and mutually encourage in our similar situations.
In my heart I am fully confident that He is NOT punishing, abandoning, or sentencing me with ME/CFS. It is clear that He is calling me to a deeper understanding of His sovereignty in suffering and His purpose in pain. I have confidence in the call He has placed on my life: to be a helpmate and partner to Greg, a mom to my beautiful daughters, and a voice of His gospel to others through the music he has given me. I surrender to Him in such gratitude for choosing to work in and through this broken vessel. May He receive all glory, honor, and praise!
What is ME/CFS?
If this is the first you’re hearing about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS)
you’re not alone. I’ll let you follow that link above for a helpful and more comprehensive description of what it is and what causes it
(as far as we understand it today with limited scientific research). As I mentioned, it is largely unrecognized by the science and medical communities, as well as the public. It is under-researched, underfunded, and misunderstood, but it is a very real disease affecting millions of people in the US and around the world. Here’s a concise and helpful diagram that breaks down the big terms:
I want to share the whole story of my diagnosis here, not necessarily because I think everyone should (or will) read it. Feel free to skim. But I do hope that sharing the whole story will help shed some light for others out there who may be struggling with similar chronic illnesses. Sometimes it just helps to know you’re not alone and maybe this will help some of you find a diagnosis even sooner than I was able to.
We don’t know exactly what “causes” ME/CFS, but it is suspected to be related to a severe virus that kicks the disease into action (see the Open Medicine Foundations definition for more). One theory is that a virus actually manifests in the “vegus nerve.”
In tracing my own health history, the last time I really felt “healthy” was about 5 years ago. I suspect that my ME/CFS journey began less than a month before I got pregnant with my second baby in 2011. In November I got a really bad flu. The worst I remember having in a long time. Less than a month later I was pregnant and we made the decision to move to California the following summer. At about 3 months pregnant we moved out of our house and into my parents house while ours sold. Meanwhile I wrote, recorded and performed an album while we began raising support for my husband’s internship and ordination into the PCA and I tried to keep up with my 1.5 year old through morning sickness and the physical strain of pregnancy.
Five months after that, at 8 months pregnant (with barely a month to settle before the new baby arrived), we moved to California. And so we entered a brand new city with no family to help, new germs to submit to, the beautiful but physically demanding miracle of birth, postpartum, newborn sleepless nights and breastfeeding, all of which does a number on any woman’s body. Then one year into our Cali stint we moved again into a new apartment. Although our time in CA was wonderful, it had its hard moments in marriage, parenting two spirited kids, and dealing with some personal spiritual anxiety while struggling with what I believe I was undiagnosed postpartum depression. I experienced a lot of beautiful growth spiritually during that time too, as well as inspiration for my art. During that time I wrote and recorded my second album, Undone By Grace which really documented a lot of what I was wrestling with spiritually.
Then, after our second year in CA, we uprooted yet again and moved to Phoenix where my husband took a call as as lead pastor of a church plant. Adding to all of the above physical stress, emotional stress continued to compact when I had a death in the family within a few weeks of moving. Then several months following, I rushed home to NM to be with my mom who was hospitalized suddenly, and almost lost her life to a rare and severe vascular disease.
I’ve learned that the body stores stress in ways that we don’t often realize, and the brain maps out pathways and sort of “rewires” during trauma. The brain can get “stuck” in trauma mode (which is not good on the body). It was about that time, roughly two years ago, and not long into our first year in Phoenix, that my symptoms began, or perhaps finally could not be ignored. It’s possible that they were there from the beginning of that first flu in 2011 but I just powered through, functioning on fumes for two years, pushing myself to the limits, wearing down and not realizing that I was headed for a major crash.
It started with extreme fatigue. One day I was balancing the mom, wife, musician, and church planter’s wife roles without a glitch. Then suddenly I couldn’t make it to 9am without feeling like I had been drugged and my body couldn’t fight the “hit by a truck” exhaustion. I would submit myself to the couch and try to stay alert enough to keep an eye on my busy 3 and 5 year olds. Sleep was either altogether un-refreshing or I just wouldn’t sleep at all due to these strange adrenaline kicks where just as I’d nod off exhaustedly my body would “kick” me into a kind of limbo state of semi-aware dozing. These were often accompanied by racing heart and anxiety because I knew the next day would be rough without a good sleep under my belt.
Sleep deprivation aggravated the fatigue and then came mental confusion, forgetfulness, and brain fog. I had trouble concentrating and staying focused in conversation or even reading books. I developed anxiety around social situations where I would have to engage with other people, especially if I didn’t know them well (not good for a pastor’s wife!). I began having panic or anxiety attacks when simply going to the grocery store. I often felt dizzy and disoriented, listless and “out of body.” Sometimes my limbs would feel numb, tingly, or “slow” to function and fatigued in specific areas. I became really sensitive to light and sound and began wearing earplugs throughout the day because the “joyful noise” of my children was literally painful to me.
Then came the pain… I started feeling like I had the flu a lot. Think full body aches from head to toe, but with more acute and isolated pain in random areas from the upper spine/neck area to my cheek bones, wrists, or fingers. I would have chills like a fever, but my temp would remain normal. I would be writhing in bed in pain multiple times a week feeling alone and helpless, afraid in the unknown of it all, and guilty for the ways I felt like I was “failing” at life and parenting.
A new normal for me also means a new normal for my daughters. On the hard days, Aria brings sweet notes, hugs, and helps with little sister, while Violet will often snuggle up with me, sweetly humming and quietly offering her ministry of presence.
My Journey to Diagnosis:
Initially I went to 3 different docs, all of whom ran the basic blood tests. Everything came back normal. Mystified by the lack of explanation, doctors initially wrote me off as simply having anxiety and depression. A cocktail of medications was the blindly prescribed solution. My instincts told me that there was more to the story. I knew these were symptoms of something deeper going on. I found a more sympathetic MD (with integrative/naturopathic leanings) who was willing to spend more time helping me dig. I proceeded to spend nearly 9 months undergoing an array of tests to rule out everything form anemia, to auto-immune disease, to thyroid disorder, and other potential issues. I already ate very “cleanly,” but I tried dietary adjustments, went from rheumatology to endocrinology, added vitamins, and omitted certain foods. I experienced some initial improvement from some of those adjustments, but still lacked an answer. On paper, I looked normal. I felt so far from it, but was beginning to wonder if it was just all in my head. Still, I knew something was physically wrong and I did not give up looking for an answer.
At last, through a mutual connection, I got an appointment at the Mayo Clinic in Scottsdale with the founder of the Integrative Medicine program. He spent over 2 hours going over every test result I had accumulated over nearly 8 months, and doing his own intensive work-up. For now, this is a diagnosis by elimination. And although there are no “bio-markers” yet for this disease (and thus no definitive blood test for diagnosis), my Doctor, has spent a great deal of his professional career to the study of ME/CFS, and has done some of his own research, publishing papers and lecturing about ME/CFS with colleagues in the UK. He recognized and confirmed that I indeed had this disease. I was so relieved to have an answer! I wept for joy at having a NAME for it, and validation that I was NOT crazy or making it up. There was a real, chronic process going on and now I could move forward with learning to manage and treat it and Lord willing see some healing and restoration.
Throughout this process, my husband was, and continues to be, a rock, wholeheartedly by my side, picking up the slack with the kids and taking care of me when my pain and fatigue is severe. He has supported, listened, fought for me, prayed, and long-suffered, meanwhile working faithfully and providing for our family.
What ME/CFS looks like for me today:
We moved again this year. This time coming full circle back home to Santa Fe, NM, closer to family and into an incredibly supportive and wonderful community. (And by the way, the Phoenix and San Diego communities were equally supportive and wonderful along our journey. God has cared for us every step of this journey and we are deeply grateful.)
These days, when I’m “flared up,” I still experience many of the symptoms I had 2 years ago, but in learning to manage my disease, some of the symptoms have lessened greatly. I still deal primarily with trouble sleeping, fatigue and the myalgic (flu-like) pain. When I’m taking care of myself my flare-ups are less frequent and less debilitating.
What triggers my “flare-ups” varies, but it can be as simple as a restless night or it can come as a “crash” after a week (or even just a day) when I’ve put too much on the plate . I often experience what’s called “payback.” That is, a day or two, or even three following any exertion when I can barely function. When I exert myself in even the smallest of ways (physically or mentally), my body has, for some reason, been wired to misinterpret my efforts and overreact.
The best analogy I’ve heard is to think of an every day exertion or stressor (like doing the shopping or taking the kids to the museum) like a small birthday candle burning in our bodies. When blown out, it creates the tiniest little bit of smoke. In a healthy person, the body’s response would be minimal. It’s normal activity requiring a fairly minimal amount of physical effort or complex processing. The “smoke” should just dissipate with minimal effect on our bodies. However, in the body of an ME/CFS person, that tiny bit of smoke triggers the whole body to respond as though a raging fire were burning. Fight or flight hormones (called cortisol) begin dumping in an unnecessarily large amount. The smoke alarms go off and all systems are a go in response to what should be a very normal thing. Naturally, following an internal episode such as this, the body of an ME/CFS person responds as though they’ve been hit by a truck, run a marathon, or been sleep deprived for 48 hours straight.
In short, we crash and burn.
Sometimes even my busy Aria will slow down enough to rest with me. My children are two of the best reasons to keep pressing on in faith and pointing them to the One who sustains.
My New Normal and How I’m Managing my ME/CFS
I have NOT been great at self care. I have been moving and having babies and adjusting to new cities over and over again while perusing a career in music and serving in the church. I have not been good at slowing down, saying “no” to more things and “yes” to rest. I have allowed myself to be very self-critical, even self-condemning when I make mistakes. I have given in to worry, anxiety, and anger, storing up these toxic stress responses in my body until they have come boiling over. None of this helps the pre-existing condition of ME/CFS.
I know now that stress is a HUGE trigger for me, so I have focused a lot on minimizing mental and physical stressors. Anything that calms, grounds, soothes, warms, relaxes or slows me down is very helpful. I have to carve out ample time in my day for it.
So far, here are a few things that are helping me manage:
-Routine. Healthy rhythms create space for me to adequately rest and prepare for the events and the “doing.” Planning and pacing myself and limiting the number of busy events outside of the routine per week.
-Laying down or slowing down AS SOON as I feel achy or fatigued (aka NOT just powering through)
-Staying hydrated and nourished with healthy foods, mostly veggies, fruit and quality meats, (limiting sugar and processed foods).
-Prioritizing sleep. Setting a reasonable bed time, daily 30 min nap if possible, limiting TV and phone exposure right before bed or any other stimulants)
-Staying connected with my husband. Communicating, praying together, date nights, and connecting physically.
-Supplementing with vitamins, herbs, and foods that support adrenal glands and immune system.
-Mindfulness. When I have to lay down I often put on relaxing music or a guided relaxation recording. I pray, breathe deeply, and try to be present in the moment. I try to focus on gratitude and count the things I’m thankful for.
–Spiritual self care. Prayer, devotions, worship, etc.
-Massage, very gentle yoga or tai chi movements, chiropractic, and acupuncture are all some physically beneficial things as well. I try to incorporate at least one of these into my routine per week.
All that said, I am still learning how to manage this disease, but I am seeing much improvement, primarily in the way I’m learning to respond to it mentally and spiritually. On the days when I’m flared up, if I give in to doubt and fear I feel worse.
However, when I submit those hard days to God, relinquish control and and ask Him to be my portion, I find great peace and HOPE even in the midst of the pain.
As John Piper has said:
“Suffering clearly is designed by God not only as a way to wean Christians off of self and onto grace, but also as a way to spotlight that grace and make it shine. That is precisely what faith does; it magnifies Christ’s future grace. The deep things of life in God are discovered in suffering.”
“Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Cor 12: 9-10