How Do I Capture My Ehlers-Danlos Syndrome Experience for Others?

I see the micro expressions flicker when I try to talk about my chronic illnesses. The “here we go again” looks, the glazed over or nervous faces. Alternately, I hear concern that overwhelms me, or questions that sometimes I don’t want to or can’t answer. Occasionally, there is a genuinely empathetic conversation about my chronic illnesses that leaves me refreshed and not wanting. But, more often than not, I feel the loneliness that accompanies them. And what is there really to say to convey the experience of life with chronic illness?

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

What I really want is for my loved ones to take a difficult hour or day of being in my body and then return to themselves with that knowledge, an aha moment of understanding, finally, what it takes to be me facing my body each day. Then, I think of all my fellow warriors and I am humbled to be among them, not the one in the most pain or the least pain, but present alongside them in the experience of physical struggles. I cannot pull away from that experience now; it is part of me that only they can understand fully. I access my pain in order to connect with others who are hurting and am alternately empowered by a new understanding of that experience and exhaustion. My support groups are a place where I can find myself in others, but are also a place where I sometimes have to avoid because I over identify with the experiences that remind me too much of my own. The anger, sadness, grief at what we all face from our bodies – from those around us who diminish, avoid, reject or attempt to redefine our experiences in our bodies is palpable. So there is only so much relief to be had among my own people.

The last few days my knees keep subluxing, partly sliding out of place abruptly when I try to take a step. My ankle has buckled twice and is weak and tender. My wrist throbs and I cannot support it without a brace. In fact, I should be braced in all these areas, but I am unsure for how long. I feel like a pile of bones held together with loose string; like a jiggling puppet person. I long for a wheelchair or a cane or some visible sign of how difficult it is for me to move some days. But how to explain the days when my knee stays where it needs to be? How to keep from losing the muscle mass I need to prevent further deterioration and strain on my ligaments and tendons?

I both crave and dread the use of mobility aids. They hover in my life like inevitabilities. I long for them to take a rest, but know that if I become too dependent on any of them right now, I might lose my ability to maintain the muscles that keep my body together and functioning at their current level. But they are tired. My dread comes from the fear of losing more of my physical ability. My neck feels like it collapses in on itself and my esophagus pulses multiple times a day. Sometimes it feels like it shifts out of place, but who can explain that? I can’t sleep because my whole body is in spasm, shaking from the effort of holding it together all day. The effort is something most people are not consciously aware of; it is like involuntarily committing my body to a rigorous course of exercise each day, one it cannot sustain, then dealing with the after effects. I look at this paragraph and think that I haven’t even covered one category of symptoms from one illness that I deal with daily, but why list them? It reads like a sob story or a plea for attention, something I loathe offering to others in my need for understanding.

My husband, in an especially insightful and empathetic moment, thanks me for participating in an all day activity with the family because he knows it costs me. I appreciate this so much, more than the days he kicks my butt for pushing myself too hard because he knows I will pay for it – even when he is sometimes right. I repeatedly try to explain that I don’t always know what my limits are. They are ever shifting and even so, I often push myself to be present as much as possible because I choose to participate fully in my life. Even I don’t always know the boundaries of my body anymore. What I do know is that the days I am couch or bed ridden, all I long for is to exist among others and to do things. Those days, I wish for the ability to wash dishes, to clean toilets, to bend to sweep the floors, to dig in my garden, to sleep laying flat, to sit with my feet down, to stand, to be bumped or jostled by my small children without it causing pain, to even walk to another room.

On good days, I sometimes take the ability to do these things for granted; I hide in my old, blissfully ignorant life where I effortlessly existed in the world in my body. I play pretend, welcome the break, pack in everything I can do before the next incapacitation. But even then, there is a shadow haunting me, one that reminds me that any reprieve is temporary. Every activity has a cost; I turn in my spoons like currency. Every decline in my body is fresh grief; a reminder that things can and likely will become worse. I cannot go down that rabbit hole. Once future oriented, I am literally forced by my body to live fully in the day I am in – and this demands a present orientation I have struggled with throughout my life. I am thankful for the lessons that pain is teaching me.

How can I capture this experience for others? If anyone really wanted to deeply listen to the complete experience, I still can’t fully describe what the experience of my chronic illnesses is like for me. It is ever changing, elusive, private and yet universal. It is struggles of a unique sort, but that is the common thread for connection with others who are experiencing the same or different illnesses or just dealing with grief in general. Yet it doesn’t diminish; I live it every day and while many days it hangs out in the background, when I want to convey who I am to those dearest to me, the words are not sufficient when spoken or received. In this universal experience of being the only one with a front row seat to our own life challenges and how we are changed by them, we are all connected. This is my life now, and I hold the living of it close to me, like a mother comforting her child, because I am the one best positioned to do that for myself.

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