The Gift of Sickness: How EBV Changed My Life

Most people would not think of sickness as a gift.

When we’re sick, we tend to feel frustrated, overwhelmed, confused and irritable. Most people would hardly call those feelings “gifts,” but I’ve learned that some gifts come in unexpected packages. Sometimes we’re given gifts that we would have never asked for that end up being more valuable than the thing we thought we wanted.

Over the past eight months, I’ve been through a journey with sickness that I’ve shared little about with you. I’ve continued posting recipes and tips and tricks all while going through an incredibly challenging time with my body and my spirit.

It’s time to share what I’ve been going through and learning in the process of this time of transformation and growth. My wish is that you find hope for your own situation in the midst of mine. When we are honest and vulnerable about our own struggles, we invite other people to be honest about theirs.

Gift #1: Pain is the body’s way of bringing us back to the present; it grabs our attention.

It was Valentine’s Day 2017.

Instead of enjoying a romantic dinner with my husband, I’d been home sick all day and was at the doctor’s office feeling depleted, exhausted and in pain, so tired I felt like I was going to pass out.

It was the fourth time in four months that I’d been sick for a week at a time with symptoms of fatigue, pain in my throat, swollen lymph nodes, and listlessness. I just didn’t feel like myself. My voice was always one of the first things to go as a result of each bout of illness, which was problematic, considering how much of my time I spend speaking, presenting and consulting. I love to sing, too, and I hadn’t been able to do that joyfully and fully for months. I couldn’t seem to get to the root of why I kept getting sick.

I felt isolated, alone, defeated and scared. 

I sat next to my husband, Bill, and across from Dr. Bill Rollow, an M.D. trained in integrative medicine, who has become my parents’ doctor and mine in recent years. He understands how the body operates as an interconnected system rather than a set of disconnected symptoms. He approaches his patients with an abundance of gentleness, kindness and love and seeks to identify the root cause of why someone isn’t well.

As I was lamenting how awful I felt – sore throat, swollen lymph nodes, fatigue, low energy, malaise, a cough, congestion – Dr. Rollow asked me:

“Would you say this is the result of pressures from the outside and work, or would you say that it’s more self-inflicted?”

Without hesitation and with a great deal of conviction, I knew the answer:

“Oh, it’s totally self-inflicted. 

I do this to myself.”

Tears began to well up in my eyes and roll down my cheeks, as I sat in a state of sheer desperation, realizing how much of what I was experiencing was brought on by my own demands. It was my relentless drive to achieve, succeed, and be perceived as worthy and valued throughout school and in my career that brought me to this point of exhaustion.

A lifetime of striving, proving, achieving, and performing.

My body and soul were tired.

We talked candidly about how I would have to decide that I wanted my life to look differently if I wanted to feel differently. I would have to change some things if I wanted to start feeling better and heal emotionally and physically. I had to be honest about how much I tend to set my personal needs and health aside for the sake of my career and my desire to get ahead.

At the end of our conversation, Dr. Rollow said he was going to test me for Epstein-Barr Virus (EBV). I had never heard of it and had no idea what it was. I’ve come to learn that EBV is an acute form of mono that many people have in their bodies but that does not often manifest full blown. It tends to be brought on by prolonged stress and other hormonal changes. It’s more likely to occur in an immunocompromised person. I fit the bill perfectly.

I’ve learned that many doctors don’t think to test for EBV right away and often test patients for things like Lyme disease, lupus, and mono when they have symptoms like mine. Fortunately for me, Dr. Rollow knew better. When the lab results came back, it turned out his suspicions where confirmed; all of my EBV antibodies were elevated.

Each month when the virus reactivated, I would get more and more dejected and distressed. I felt like my body was betraying me again, as it had for much of my life with chronic ear infections, sinus infections, strep throat, bronchitis, acid reflux, and amenorrhea.

What was going on?

Will I ever feel better or like myself again?

Why was this happening to me?

I’m supposed to be the healthy one.

In the midst of my desperation, I was given the gift of hope.

Within a week or so of receiving the news about Epstein-Barr, I received an email from my nutritionist, Kasia Kines, who has helped my body heal from years of other dysfunctions and ailments. She is finishing her PhD in Functional Nutrition and sent this email to her email list serve on February 28th.

No way. 

I couldn’t believe it.

She’d picked Epstein-Barr Virus.

“Here’s your sign, Rachel.”

Suddenly, I had hope.

As I’ve shared before, Kasia has been instrumental in my healing journey and has given me hope before. I immediately reached out to her to let her know I had the virus she was studying and had no idea what to do about it. She was eager to help.

As I began working with her, I learned what a nasty virus EBV is and how it ravages your immune system and can wreak havoc on your neurological system as well, left unchecked. In my case, it camped out in my throat, which was a primary cause of losing my voice. I learned that stress and hormonal changes trigger reactivation of the virus, which meant I’d have to make some lifestyle changes and reprioritize sleep, friendships and aspects of my job. I added in even more nutrient-rich foods to my diet and started taking about a dozen different supplements to restore my immune system and fight the virus (I’ll share more about that later!).

Within a week of treatment, I felt like a switch had been flipped and started to feel energized again. It was amazing how quickly my body responded.

Sickness was my body’s way of saying, “Hey, listen up. Something’s not working here. Pay attention.”

Gift #2: We cannot become what we need to be by remaining what we are.

The more I reflected on why I’d gotten to this point, the more I realized this virus was a symptom of a deep-seated issue. Growing up, I felt like I had very little social value and worth in my peer groups, so I sought my worth in other places and found it in achievement.

If they wouldn’t embrace me socially, surely they’d find value in what I could bring to the table by being smart. It was hard for me to see how I brought value if I wasn’t being useful to someone in some way. The idea that just being me and not doing anything to earn acceptance was foreign to me. I pushed myself academically and made sure I was always performing at the highest level.

I’d show them I was worthy of attention by achieving. 

As soon as school ended, I sought the same validation in my career. I pushed myself to be a leader in my field, to create and design new initiatives, to build my job from scratch, with little to no model for how to do that. And I did. I’ve won awards and received national accolades for my work. The satisfaction that followed was always temporary and just another opportunity for me to up the ante on myself.

C’mon, Rachel. What’s next?

Don’t settle. Don’t get complacent.

You might be outdone. You’ll be forgotten.

I put work ahead of everything else, partly because I love what I do, but also because I wanted to keep “winning” in my career. I wanted to keep showing everyone how worthy I was of attention, praise and love.

I pushed and achieved my way right into sickness.

But instead of resenting it, I’ve come to embrace what this time of healing is teaching me.

Getting sick in that way made me realize the way I was living wasn’t working. Something had to change.

I had a lot of time to reflect, think, read and write during the weeks I was home sick. That alone was a gift. But, more than anything, this journey is teaching me that I maintaining my former way of living is not sustainable and that I don’t have to do this on my own.

Instead of trying to conquer this challenge by myself, I’ve sought support and help, not only from my nutritionist but also from my workplace, the Baltimore health community, and my church. I’ve had people praying for my health and healing each week and checking in on my regularly. I talked to my boss and explained what was happening, and he supported me in setting healthier boundaries at work and getting support.

I’m spending more time talking and hanging out with my friends and am fostering new relationships. I have more community and a stronger support network around me now than I’ve ever had before. I’ve come to realize how lonely life would be with lots of professional success and no friends to share life with, but that’s the path I was on, blinded by my own ego.

Seeking growth and opportunities to challenge myself are hardwired into who I am, and I know I will continue to pursue excellence in my career, but not at the expense of my health and relationships. I’ve learned two lessons in the midst of this healing time:

Connection is more important than all of our success.

Gift #3: Transformation happens when I’m not in charge.

This has been an incredibly humbling time for me. My EBV journey has reminded me who is in charge of and in control of my life – God, not me. It’s like I was playing God, thinking I could run the show and fix any issues that arose by myself.

I don’t need help.

I’ll hold the world on my shoulders.

I can do it ALL.

But I can’t, and no one ever asked me to.

I remember back in November when I first started experiencing symptoms of fatigue and a recurrence of vocal strain. I was so frustrated. I was talking with my friend, Heather, and she said something so profound that I will never forget:

“Maybe there’s something you need to hear, but you need to be quiet enough to hear it.”

Oh.

In the midst of my constant striving and busyness, I didn’t leave any room for quiet.

Maybe losing my voice had a purpose other than frustrating me. Maybe being forced to sit on the couch and do absolutely nothing had a purpose. Maybe there was something I needed to hear; maybe someone was trying desperately to get my attention – God, friends, family, my body – but I was so busy being important that I missed it.

For years, I had ignored the voice beckoning to me to “SLOW DOWN” and “BE STILL.” Just yesterday, I heard the song, “Still” three times on Pandora Radio.

You’re parting waters
Making a way for me
You’re moving mountains that I don’t even see
You’ve answered my prayer before I even speak
All you need for me to be is still

Being quiet and sitting in the unknown is so challenging for me, but I know it’s one of the gifts EBV has given me, and for that I’m grateful. It has given me the time and space to be transformed, initially against my will, but now for what I know is my greater good.

I feel like I’m more supported and loved than ever before. I am not in this alone. All of the frustration, overwhelm and pain were not without a purpose. In fact, I’ve already met several people who have told me they or someone they know is struggling with Epstein-Barr, and they don’t know what to do about it.

At the very least, perhaps I can offer them some of the perspective I’ve gained and the hope I’ve experienced.

I’ll leave you with these words of wisdom passed on to me by my friend, Stef, about finding purpose in the midst of the pain: