What the Ocean Taught Me about Chronic Illness and Relationships

“Before we arrived here [Fenwick Island State Park and Bethany Beach in Delaware], all I knew as the beach was Presque Isle at Lake Erie. I couldn't understand why my parents insisted we come here when I thought Lake Erie was just as good. But as soon as we got on the beach, and I heard the crashing waves, felt the strong tide against my legs, and tasted the salty water in my mouth, I understood.

In that moment I grasped the truth of the fact that I only know what I know.”

~My journal, August 9, 2024

This month, I experienced an ocean beach for the first time since I was two years old, and since that was twenty-one years ago, I have no memory of it.

When my parents announced they wanted to go to an ocean beach in Delaware, I was skeptical. Why drive six hours there when we could arrive at Lake Erie’s Presque Isle in less than half the time? I have been to Presque Isle three times. Presque Isle has a lighthouse, sand, water, waves, and seagulls. Presque Isle was my frame of reference for what a beach is.

Presque Isle is wonderful. I’d enjoy going there again, especially because we can make it a day trip, but Presque Isle gave me a limited view of what a beach can be. The waves of the Atlantic Ocean are mightier, simply breathing in the ocean air leaves a salty taste in the mouth, and as I discovered after writing my journal entry, it is teeming with creatures that aren’t found in Lake Erie. We saw dolphins swimming, and we ventured out one night with a flashlight and saw tiny ghost crabs that can run up to 10 mph. I saw endless water to my right, to my left, and in front of me. There weren’t rocky breakwalls in the Atlantic Ocean like Lake Erie. I also found seashells of a much greater variety than what can be found at Presque Isle.

Suffice to say, Fenwick Island State Park and Bethany Beach were not what I expected. 

During the 4.5 days we were there, I found myself thinking about this often and how this is a good illustration of trying to understand chronic illness when you don’t have one. Before I was 14, my only frame of reference for being sick were stomach bugs and colds. I could not understand the degree of weakness I would feel when chronic illness became part of my life. I couldn’t grasp things like extreme sensitivities to light, sound, and smells that were key features of my illness. I couldn’t understand being too sick to watch a movie or read a book. I didn’t even know the term “chronic illness” existed.

That’s not to say I didn’t know people with chronic illnesses. I did. I knew people with autoimmune conditions, who had to eliminate gluten and dairy from their diets. I knew people who had to take medications and supplements, and I knew my neighbor who had a bad case of asthma and who every time I saw her, was receiving oxygen through tubes in her nose. But I didn’t really know what they were experiencing, and I didn’t think about how chronic illness exists on a spectrum with some of those people only leaving their beds for medical appointments. For the most part, I wasn’t aware of those people. After all, they could not attend any of the activities that I did, such as church. They were out of sight and out of mind.

After chronic illness entered my life, I remember feeling frustrated and crying to my parents one day that one of my doctors did not really understand my illness. I acknowledged that he had read medical texts and knew both how my disease progressed and how to treat it. He understood it from a scientific perspective, but he didn’t really know what it was like to suffer with it and didn’t show a lot of sympathy. I’m sure he had a frame of reference for illness from his own experiences with it, but they were limited. And even if he had the same diagnoses as me, everyone experiences illness differently. Just because I have experienced chronic illness does not mean that I know exactly how someone else experiencing it feels. Think again of the differences between Lake Erie and the Atlantic Ocean. 

But the point of this blog post is not to discourage you from trying to understand or for you to distance yourself from those who are chronically ill or in any situation you haven’t experienced. Instead, my goal in writing this is the opposite. A few lines from Josh Wilson’s song Revolutionary play regularly in my head. 

“Let's take some time, open our eyes, look and listen,

And we're gonna find we're more alike than we are different.”

The truth is that we are all human, and I would say what makes chronic illness so hard is not the symptoms themselves. It is what the symptoms often lead to: desperation, loneliness, anxiety, depression, lack of freedom to do what we want, feeling misunderstood, deep questions about God, struggles with self-worth, lack of dignity, and comparison. Does any of that sound relatable to you?

In 2002, a survey conducted in Niger by the Office of the Prime Minister asked the poor of that country to describe poverty. To quote a blog post from Compassion International, “Only 36 percent of the poor in this survey described poverty in terms of material lack [scarcity]. Here, the poor described the experience of poverty primarily in terms of suffering relationships and lack of belonging, dignity and freedom. Similar descriptions were found in a major World Bank study published in 2000, Voices of the poor: Can anyone hear us?” I use this example to illustrate how poverty is more than a lack of resources, just like chronic illness is more than a lack of health.

When my family sponsored a child in Ethiopia through Compassion International a few years before I became ill, I had no idea what to write to him when my dad suggested it. As a result, I never did. I thought my life would be totally unrelatable to his, but we are all human. We all struggle. Even though I didn’t yet know as much about suffering as I do now, if I had written to him about anything, even my pets, it would have shown him that someone thought he was worthy of their time. It would have given him some sense of dignity, connection, and love. I’m thankful for my family members that did write to him until he finished the program, and I’m thankful for the four children I now write to regularly as I volunteer as a child correspondent with Compassion International. I was inspired to volunteer in this way after receiving numerous letters myself when I was bedridden because they made me feel encouraged and less alone.

So, to those of you who want to be a good friend to someone whose shoes you haven’t exactly walked in, be it a child in poverty, a chronically ill friend, or someone in another situation, do this: listen, ask questions, and don’t assume. Know that your point of reference is limited, but your care doesn't have to be. Just show up, be it in a letter, a text, or a visit. And remember that while Lake Erie and the Atlantic Ocean are different in ways you can’t quite grasp until you have experienced both, they are both still large bodies of water with similarities. Likewise, while you and your friend may come from different backgrounds and cultures, you are both humans with some degree of similar struggles and with the same need to for love and connection. Reach out. It will mean more than you know. You can do this.