More Than We Expected

Unexpected Blessings in Health Challenges

May 19, 2024

When Illness Hits

“I have a new strategy for walking to community college,” Ellie said, her eyes sparkling. “I sit down on the curb every couple of blocks.”

She nodded, like she had just shared a lottery ticket with me.

“It helps a lot. I’m not as dizzy by the time I get to school.”

I felt the heaviness in my chest, but tried to stay positive. “Way to go on problem-solving, sweetie!”

A few days later, my husband Peter said in a phone call, “We have to get Ellie more help.”

He sighed, as if he was afraid to tell me. “When I was driving back home just now, I saw her sitting on the curb, just a block away from our house.”

I rubbed my eyes. “I already know about that,” I replied. “It’s okay.”

Navigating a New Diagnosis for a Neurodiverse Teen

In the past month since we got a tentative diagnosis for Ellie (read about those hard moments here), her health has plummeted. It’s almost as if having the medical term gave her body (or her anxious brain) permission to embrace the condition completely.

It turns out that Ellie probably has POTS, a condition in which a patient’s heart rate rises too fast when they stand up. It includes symptoms such as dizziness, nausea, headaches, blurry vision, feeling cold, and overwhelming fatigue, among others. For Ellie, her symptoms are triggered by temperature changes, by standing or walking, by riding in a car or climbing the stairs. So basically, she experiences symptoms all day long. Doctors tell us that they are seeing an increased number of POTS cases linked to long COVID. This fits Ellie’s profile, since her symptoms began in earnest after contracting COVID last summer.

It doesn’t help that Ellie is a neurodiverse teen in recovery from an eating disorder. In some type of cruel joke, the act of eating itself can trigger Ellie’s POTS episodes. In addition, Ellie’s nutritionist suggested that Ellie avoid foods that exacerbate her symptoms. Since Ellie is already a picky eater and she just decided to become a vegetarian, this means her menu choices just shrunk to a list that I could write on one hand.

Ellie has an obsessive brain to begin with; facing chronic health challenges for the past year has become her “special interest,” in her words. If she could earn college credit for extensive Google research, Ellie would have already completed a year of college. Unfortunately, a therapist told Ellie this week that the more she focuses on her illness, the worse it will become. So Ellie is playing the strange game of noticing and attending to her symptoms, while trying to distract herself at the same time. When she feels like she is going to fall over, she recites the lyrics of Taylor Swift songs like “All Too Well.” The ten minute version.

The Challenge of Finding Treatment

All of this is made more complicated by the fact that we cannot get into a specialist to give Ellie an in-depth evaluation and treatment plan. Even though we live in a major city, the combination of a growing number of patients and a limited number of trained doctors means that if you have POTS, you have to wait half a year to see a neurologist or cardiologist who has the training to help you.1 You also spend a lot of time calling doctors’ offices to see if anyone has an opening. You become so accustomed to their “on hold” music, like constant background noise, that you forget that it’s there.

In the absence of doctors, if you are a teenager, TikTok influencers become your guide. And you figure out some basic home remedies, starting with ingesting more salt than you ever thought possible and wearing compression socks like your grandma.

Share Evidence of Grace

Parenting a Teen with Chronic Illness

As Ellie’s mom, I have taken the same approach as I did when Ellie’s eating disorder blew up.

I work my tail off to get medical help. I gather referrals and scour the internet. I talk with my friend’s friend’s friend whose daughter has POTS. I bargain with hospital schedulers and make endless appointments and get on waitlists and add appointments to our calendars. I follow every lead. I wake up strategizing our next moves.

At the same, I pray desperately and deeply. I ask others to pray. I take long walks and watch the trees very closely to calm myself down. I talk with trusted friends about how angry, sad, and scared I feel.

Unexpected Grace

But the other day, when I was feeling particularly discouraged, we saw evidence of grace.

In March, Ellie was accepted to a large public university as a transfer student, an event which made us all cheer and high-five and shed tears of joy. It’s closer to home and has more services for neurodiverse students than the college she withdrew from. In the midst of Ellie’s health challenges, this hope of a fresh start in a supportive environment has been a beacon of light.

However, in the past month, I’ve begun to worry that Ellie’s health will kill our college plan, just like it did last fall. Even though I’ve learned to stay in the moment, it’s gotten increasingly hard to envision her navigating life away from home with her physical limitations. In some ways, I’ve gradually found myself considering the reality that my daughter doesn’t just have mental health challenges; she has also ceased to be an able-bodied person. There is grief there that I’m afraid to touch.

On Thursday, Ellie met with an Access Specialist from the university’s disability office, an appointment we’d eagerly anticipated for weeks. Our top priority is to secure their help to arrange a single dorm room for Ellie, which we believe is a necessity. We had our family therapist rewrite an accommodation letter three times to meet the office’s thorough standards. We left multiple voicemails and emails until we connected. Then Ellie had to wait one month for a meeting. I didn’t have high hopes for the call.

But Ellie came out of it beaming. “Mom, it was fantastic! This university is amazing! So much better than last year! I’m going to get so many more accommodations than I expected!” Then she started ticking them off on her fingers. “Not only did she write me a letter for a single, but she said that with my POTS, I can get excused absences if I’m having a flare. They can give me a device to record lectures if I’m sick and can’t concentrate. They even said they can drive me to class if I need it!”

Ellie’s eyes lit up. She feels seen, I thought. Someone is validating her needs.

“That’s awesome, Ellie!” I replied. I hesitated, then asked, “How are you feeling about going away to college these days? We haven’t talked about it in a while.”

Ellie shrugged. “I wasn’t sure about going to the university with all my health stuff, but now I think I can do it.” She smiled. “I’m going to finish my assignments right now, okay?” And she turned back to her laptop to reengage with community college classwork, which gives her purpose and structure. She looked up. “Did I tell you that I got one hundred percent on my final research paper?”

At that moment, I realized that perhaps my prayers have been too narrow. My husband and I have begged God for healing, for solutions, for Ellie’s body to be fully restored, as soon as possible. While I intend to keep fighting for that outcome, I hadn’t considered other ways that Ellie could be taken care of. God may be offering Ellie something different and somehow better: a more supportive community than she could have imagined, to meet her where she is at. Maybe her new community will love and accept her exactly as she is, as a brilliant, gifted, neurodiverse student with disabilities. It’s not the path I would have chosen for her, but that doesn’t mean it’s not filled with beauty and depth. Maybe that depth of support will provide the foundation for Ellie to shine.