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.
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.
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.
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.
- memory loss
- brain fog
- slurring of speech
- inability to recall words
- extreme fatigue
- trouble sleeping
- heart palpitations
- joint pain
- muscle pain
- severe neck stiffness
- enlarged knuckles
- arm numbing
- hair loss
- puffy eyes
- eye floaters
- blurry vision
- sensitivity to light
- 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