She Has What?

Photo by DJ Johnson on Unsplash

“She has what?” I exclaimed, after my wife shared news of our daughter’s latest medical diagnosis. This doctor—the twelfth one in a long line of supposed experts—told us that our sixteen-year-old girl was grappling with a little-known but massively-challenging chronic-pain condition called Ehlers-Danlos Syndrome, or EDS for short.

After nearly 18 months of exhausting legwork, and the increasingly desperate position we felt ourselves in, the clarity of a straightforward diagnosis felt mildly reassuring. But it wasn’t good news.

I don’t think there’s a good time to get terrible news, but this was probably about the worst. In addition to our daughter navigating through the tumultuous teen years, she was also staggering through the hellscape of a once-a-century pandemic. Life in Southern California in February of 2021 resembled a low-budget Ingmar Bergman movie: everyone was dour, social interactions were few and far between, and the future seemed uncertain at best. Not only was our daughter spending little time with friends, she wasn’t even back to in-person schooling. She was mostly laying around in bed, sometimes twenty-three hours per day. And into this toxic brew of hopelessness and confusion, we added a shot of “terrifying diagnosis.”

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There is some good news, however. Her form of EDS, hypermobile EDS, is manageable. It’s a connective-tissue disorder—bones easily slip out of joint and internal systems are hypersensitive to diet and environmental allergens. The condition won’t shorten her life, but it will place serious burdens on her. She needs to commit to self-care and healthy living, which is hard for most people, let alone a teen.

Yet she has pulled off what seemed like a pipe dream in February 2021: she has actually accepted her condition, taken steps to manage her health, and committed herself to using this challenging diagnosis for good.

She was just accepted to college at UCLA as an incoming freshman and plans on dedicating her career to helping people with similar medical conditions. She chose not only to live; she also chose to thrive.

As her parents, we were thrust into a dreadful and complicated situation. I think we did several things right, all of which made us stronger. Here’s where we landed.

1. We separated her experience from ours. Although it was close to impossible, my wife and I spent focused and dedicated time talking through how we felt about her condition. We took turns screaming and crying. The experience was agonizing. But allowing ourselves to transit through this process accomplished quite a bit. She got to have her own experience rather than managing ours. We avoided asking her to say or do anything to make us feel better. We never forced her to seek treatments to allay our sense of helplessness. We embraced our pain so that she wouldn’t have to manage it.
   

2. We gave her access to resources and then let her navigate her way through them. Predictably, our teenage daughter didn’t want to engage in self-care practices. She didn’t want to restrict her diet, practice meditation, or talk about her feelings. These are efforts that most adults struggle to do; expecting a sixteen-year-old to immediately embrace them was too much. So, instead, we muddled through. This meant that she often made her own suffering worse. As parents, this was just about the hardest part. There’s no pain like watching your own child suffer. But most every time we felt a desire to intervene and force her to do something, we pulled back. We let her chart her own course.
   

3. We witnessed and acknowledged her struggle. On the odd occasion that she wanted to talk about her condition, we were subjected to an avalanche of misery. She questioned why this was happening to her. She accused us of not really caring about her. She told us that we didn’t understand what she was going through. With a few rare exceptions, we didn’t directly respond to her comments. We simply listened and acknowledged her feelings. We cried with her. We absorbed her insults. We expressed sadness about our helplessness. But we didn’t make false promises or shut her down. We sat in wicked grief. We tried not to flinch.

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The above learnings are outcomes of a slow and messy process. We got to a good spot, but we stumbled and fell quite often. The deeper truth is that the first few months of dealing with her diagnosis were horrendous. My wife and I oscillated between carrying on as though nothing had happened and launching a Manhattan Project to cure our daughter of an incurable disease. No amount of gratitude will properly acknowledge the support we received from family and friends. For a time, we felt defeated. Nothing worked. Although we were her parents, it was her ordeal to go through. Our strength had its limits.

Yet just as things seemed their bleakest, something began to shift. Her diet improved. Her stress-management practices saw the light of day. She embraced physical therapy.

Then, before we could even adjust to this progress, she turned her sights on applying to college. We were cautiously optimistic. We applied the same approach to supporting her with the application process as we had with her condition: 1) Separate her experience from ours, 2) line up resources and let her use them, and 3) be there for her.

And, it worked! Several months later, our daughter received the email of her dreams. She had been accepted to UCLA, a university with a single-digit acceptance rate.

We were all over the moon!

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Not everyone goes through our family’s struggle. Thank goodness. But every family faces unexpected challenges. And every person deals with overwhelming difficulties, even if they only last a short time.

When facing big obstacles, remember my family’s approach, which we learned through trial and error.

When looking at a challenging situation…

1. Separate your own issues from the other people’s issues. What is yours to deal with and what is others’ to deal with? Take care of yourself—put your own mask on first, as the airlines say—before getting involved in what others need to do.

2. Give people options and resources, but don’t control how they use them. Trying to control others in this way either robs people of their own personal agency or builds deep relationship resentment.

3. See and acknowledge others in challenging situations before intervening. Being there for people is more powerful than most realize. People can sense motivations. When they know you care, they often do their own work.

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I think that most people see crisis as something that’s uniformly awful. It’s best to avoid at all costs or move through as rapidly as possible.

I disagree.

A crisis can do many positive things. First, a crisis tends to move people to meaningful action. This is good. Moving forward and making a decision is a positive development. Second, it forces maturity. A crisis typically confronts people with a host of unpleasant decisions, none of which seem attractive.

Does this suck? Yes. Is it life? You bet it is.

The older I get the more I realize that life is typically filled with a set of unattractive options. Growing up means choosing the option that sucks the least.

And three, maybe most importantly, a crisis allows people to clarify and act on who they truly are. This is oftentimes called Essence. A person’s Essence is who they are when everything else is stripped away. If you remove a person from their professional and personal roles, you have their core, their DNA. In my family’s ordeal with my daughter’s condition, there was no playbook. We had to look in the mirror and see what was reflected back at us. We had to tap into our core Essence and allow it to guide us.

Do I wish our daughter had never been diagnosed with her condition? Yes, of course. Am I glad that our family saw this challenge as an opportunity to clarify who we are and what we value? Yes, I’m thrilled.

As one of my life mentors once told me: “Never waste a good crisis.”