The Three Foes I Battle in Life With Ehlers-Danlos Syndrome

“I’m sorry,” I apologized to my husband over the phone.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

“For what?” he asked.

“I guess I feel like a bad wife. I’ve been so unwell these last several weeks, and I hate that you have to come home after a long day, and do the shopping, and worry about dinner, and put away the groceries without my help. I feel guilty. I feel guilty a lot when you are stuck doing all the things while I am just stuck on the couch. I am not the wife I wanted to be; this isn’t the life I expected…” I trailed off with a swallowed sob.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

“Why would you feel guilty about that? It’s not your fault, “he comforted. “You do so many things, in fact, I was thinking about that while you were sleeping the other night.”

My husband went on to list some of the things I have done: teaching our homeschooled children, running a virtual co-op, teaching Sunday School, advocating for the kids, writing. As I listened, I recognized that again, I was doing battle with three foes of a chronic illness warrior: guilt, grief, and internalized ableism.

Not only was I struggling with nausea, stomach cramping and other GI symptoms, migraine, flushing, and fatigue, I also had a massive case of the “shoulds,” a phrase described by many an astute therapist.

“I should be a wife who takes better care of her husband who is providing for the family.”

“I should be a person who had a more productive day.”

“I should have been a person who is bringing home a paycheck.”

“I should have had a career and a life that progressed untouched by illness.”

I was “shoulding” all over myself. Thankfully, I have someone in my life who loves me enough to see me and remind me that my worth isn’t connected to productivity or caretaking, or some ideal life conceived in the amniotic fluid of ableist social constructions or fantasies about my future. Many people with chronic illness do not have people who help them battle the three foes. Instead, they encounter individuals in their homes, workplaces, or communities who reinforce that their value is based on their abilities and productivity. It makes the internal battle they are fighting even harder.

Expectations that people can consistently physically perform with chronic illness are not only harmful, but they are unreasonable, bordering on the absurd. Yesterday, it was cool enough for half an hour that I sat and pulled some weeds from our vegetable garden alongside my husband. He wheeled the wheelbarrow to dump the yard refuse for pick up and I simply pulled weeds from a small patch. To the outside observer, it may look like I was very capable of taking care of yard work. In fact, while I enjoyed the brief reprieve from days of being trapped inside my air-conditioned home due to oppressive heat and COVID-19, for the rest of that day, I endured intense shoulder pain radiating from my scapula up my neck, a migraine, jaw pain that inflamed my face, and stomach cramping. We spent the remainder of the weekend afternoon playing board games with our children, but it took all my mental energy to remain physically present and sit at the table with my family because the pain was debilitating. Again, if I posted our day to Facebook or Instagram, folks would be seeing me smiling and enjoying the company of my family in a snapshot. The reality is much more complex.

For me, having multiple chronic illnesses is a mental and spiritual journey alongside a physical one. My husband reminded me in our conversation that I was much more symptomatic several years ago and have made a lot of progress. He reminds me not because he values my life more when I am more able, or as he caveated, “not to minimize what you are feeling” but to keep me grounded in the fact that my symptoms wax and wane. It is hard to endure suffering, especially when there is hope but no expectation that those symptoms will ever fully dissipate. It is like enduring a daily marathon with erratic pit stops for relief or climbing towards Mordor with no expectation of a return. Because of this unpredictability, grief and guilt are frequent companions.

Symptoms and pain are always present in some form, but even on the symptom-light days, the mental machinations continue. I almost used the adjective “better” in the above sentence in lieu of the phrase “symptom light” and caught myself again thinking in a mindset I want to upend. Better doesn’t mean a reduction of symptoms, and yet also it could. Better means being mindful of my inherent worth whether I am intensely suffering or whether I am light, present, and engaged with others in productive ways. Better means a life of seeing clearly, whether I am in pain or relaxed. It means that I can give myself a moment to sit with my grief and speak it out loud to trusted loved ones, that this wasn’t what I expected and wished for in my life. But it is also what my husband reminds me, that because of the presence of my chronic illnesses, I have been changed and have become and done things I never would have been and done otherwise.

I am gentler, less judgmental of others, a creative problem solver, a fierce advocate for myself and others, someone who can sit with my friends who are grieving and uncomfortable without pressuring them to move forward from that space because I know grief is an ongoing process unique to the individual. I also value my life and remaining abilities in a way that many may take for granted. I take advantage of opportunities to be present with my loved ones and whenever my conditions permit, I embrace my life fully. These are gifts I have because of my chronic illness.

Yet, I am not these gifts. I am not the grief. I am not only my worth as a spouse, or a worker, or a mother, as a friend or daughter or sister. I am. My illness leads me to the divine essence of my self: the whole instead of the parts. My illness leads me to moments of intense humility but also to inner strength and power. The three foes of grief, guilt, and internalized ableism may guard doors on my path; perhaps they aren’t foes at all, but merely passersby on this journey, that I can acknowledge, observe, and then wave at as I pass through. I know I will walk by them again and again as I continue to understand and engage with the impact of chronic illness on my life. I am thankful that I have a second on this journey who literally has my back some days when I am fatigued and struggling, but I also know that the more I confront these foes, the more I become curious about their presence, the more they can lead me to a better understanding of my true nature.

Today, I read to my children. I watched an animal documentary with them. I discussed my daughter’s writing assignment with her. I listened to old records and the rain streaming over the rooftop. I helped another EDS parent find resources online and shared experiences. I sat with a heating pad and a keyboard in between rushed trips to the bathroom. I cried on the phone to my husband and allowed him to offer gifts of empathy and kindness which I received. I made meaning and I let go of meaning. This is a day in a life with chronic illness. I am someone with chronic illness. I am.