Living with a rare, chronic illness is profoundly isolating—not only physically, but emotionally. Even when surrounded by others, I often feel like a ghost, disconnected from the world around me. I remember sitting at a party, listening to conversations that once felt familiar, and being hit with the stark contrast between their lives and mine. It was like being an alien among earthlings—their concerns light-years from my own.

Everything hit me at once: the freedom others enjoy, the loss of my autonomy, the rigidity of a life ruled by symptoms. My thoughts and reality were so different, it was like we no longer spoke the same language. I dissociated, overwhelmed by the grief I usually kept boxed away. I looked around and thought: how can they be so carefree? Over the course of a year, I had lost my hobbies, nutrition, medications, and comfort. My body, once manageable, was unraveling. I didn’t even recognize my reflection. The hardest part was not understanding why. What has changed? How did everything I had once used to help suddenly stop working?

When the pandemic hit, there was a brief, strange reprieve. With the world online, I was suddenly less alone. Video chats, social media, and texting allowed me to maintain connection in ways that felt more accessible at the time. But as my symptoms worsened, even those forms of communication began to trigger flares. Phone calls and screen time became physically difficult. I was forced to withdraw further, choosing physical stability over emotional connection. Friendships frayed. And as the world returned to “normal,” many of us were left behind. Virtual options disappeared. Precautions vanished. It felt like at-risk people were an afterthought. The consideration that had briefly existed—masks, virtual events, spacing, flexibility—faded as if we no longer existed at all.

Still, the bubble of isolation had, in some ways, become a strange comfort. When survival becomes routine, it becomes invisible—until someone breaks the illusion. I became used to my world of careful energy rationing and adjusted expectations. It wasn’t until I reemerged—sitting across from friends in cafes, chatting at community events—that I felt the jarring contrast again. Mundane and surface-level conversation became difficult. I found myself caught between wanting to talk honestly about my life and not wanting to overshare. I struggled with how to exist in conversations that felt irrelevant to my reality.

At my son’s baseball games, I could talk to other parents and feel almost normal. To them, I was just K’s mom. I wasn’t sick in their eyes, and I could enjoy the anonymity. But the moment someone asked, “What do you do for work?” the simplicity crumbled. That question carries so much weight. Most people expect a neat, socially acceptable answer. But my truth is complex—I don’t work, not because I don’t want to, but because I physically cannot. I’m on social security disability. Even saying that often leads to awkwardness, curiosity, or pity. If I do have the energy to go further, I have to figure out how to explain that I live with over 30 diagnoses, more than 10 of them rare.

How do I explain a condition like Ehlers-Danlos syndrome without giving a biology lecture? How do I describe my life with a failing autonomic nervous system, chronic malnutrition, and the trauma of not being able to tolerate most foods? There is no quick, one-sentence summary that does my experience justice. And yet, people ask, well-meaning, curious, often unaware of the emotional labor they’re requesting. Even the most compassionate reactions can be painful. When people try to problem-solve—”Have you tried X?”—it shifts the focus to fixing instead of understanding. I’ve tried almost everything. The grief of failed solutions is heavy. Please don’t try to feed me. I don’t need suggestions—I need people who can sit with the discomfort of what is.

With time, I’ve gotten better at compartmentalizing. I’ve learned how to selectively share, to protect my energy, and to find slivers of connection through shared experiences, even when my life looks so different. I am able to enjoy myself and laugh and feel genuine joy. But even then, there is always a shadow. Grief shows up in small moments: in the forest, when the sunlight hits my skin just right and I remember what it felt like to feel well. In those moments, peace and sadness coexist. I think, “Remember when this used to be your norm?”

I grieve the interruptions—how pain, breathlessness, and dizziness steal my attention. How symptoms rob me of presence. Even when I choose joy, I am often pulled away by my body. There is rarely a time I can do something freely without paying for it later. I miss the spontaneity of life before illness. I miss choosing based on interest rather than capacity. Most of all, I grieve the aftermath—the flares, the days in bed, the cancellations.

The most painful grief is often tied to motherhood. I’m a great mom—but I am not the mom I want to be. I ration energy to get through the day. I plan and conserve days ahead to be present for special events. I have to ask my son to be gentle with my body, to be patient with my brain. I miss baking cookies and eating them together. I miss going on adventures without help. I mourn the fact that he doesn’t remember when I was stronger. That side of me—the one who take him for a hike, run through the park, get messy in the mud and dirt—is a version of me he never really knew.

My grief also extends to friendship. I miss being the one people turned to for advice or comfort. Now, people hesitate to share, worried they’ll burden me or that their problems pale in comparison. But pain is pain. I want to know about your life. I want to support you. I don’t want to be defined by illness. I want to carry your worries too. I miss feeling needed.

Many of the friends I still have are also sick. We met through online support groups or shared diagnoses. We text each other late at night, listen to each other cry, walk each other through appointments and flares. Sometimes, we lose friends—young people with rare diseases who die too soon. Sometimes preventably. The grief that follows is deep and complex. We mourn their loss, fear for our futures, and feel the crushing weight of being gaslit or dismissed by the systems meant to help. Each death is a reminder of our own fragility.

I used to trust doctors. I used to believe radiologists were the experts, that specialists knew best. That faith is gone. I often feel expendable, policies and funding trumping patient care. Now I have to learn everything myself, advocate for every test, push for every referral. I’ve taught myself anatomy, pharmacology, even diagnostic imaging. I’ve become an expert out of necessity. And still, I grieve the time and energy it takes—the toll of having to fight to be seen and heard.

I once had big dreams. I went to a prestigious university. I worked in social services, helped write policy, advocated for marginalized communities. I got accepted into grad school. I started small businesses. I pivoted, adapted, reinvented myself—again and again. But eventually, I couldn’t keep up. My body set limits I couldn’t override. I can’t commit to a work schedule. I can’t guarantee I’ll be functional next week. The energy that could have gone toward changing the world is now spent surviving.

If I had known that I wouldn’t be able to work by 31, I would have lived my twenties differently. I would have traveled more, danced more, played more. I grieve the loss of that time. The feeling that it was wasted chasing goals I’d never reach. I grieve the loss of security—of being able to save for a house, build a future, plan long-term.

My identity has changed in so many ways. Illness has reshaped my body. Years of weight fluctuations, surgeries, and malnutrition have left me with scars, loose skin, and visible bones. I’ve developed allergies to clothing, makeup, even shampoo. I can no longer dye my hair, wear jewelry, or dress how I used to. Once, I adorned myself with bright fabrics and gemstones, expressing my femininity and sexuality. I felt confident. I had finally learned to love my body. Then illness came in like a wrecking ball. It stripped away the transformation I had fought for.

Now, I look in the mirror and barely recognize myself. I miss the me who danced barefoot in the grass, who felt sensual and powerful, who embraced her body with love. That version feels like a dream. A ghost.

I grieve the community I once had—dinners with friends, game nights, adventures with our kids. I miss cooking and eating together. Sharing rituals and holidays without worrying about infection or allergens. Feeling connected, part of a village. I miss hugging people without fear. Feeling pleasure without pain. Using my energy to chase joy and purpose, instead of managing symptoms.

Chronic illness grief is cumulative. It builds, layer by layer. There is rarely time to process one loss before the next arrives. Every time I reach a place of acceptance, something shifts. The cycle begins again—grieving, adjusting, grieving again. There’s no closure when the trauma is ongoing. I long for predictability. I crave stability. Just a moment to breathe.

I try to find peace in my body, but it’s always loud. I search for stillness amid the noise. And sometimes, I find it—a flicker of hope, an ember of resilience. I nurture that ember, tend to it gently. It reminds me that nothing is permanent, that change is constant, that better days could still come.

I don’t always trust my body, but I am still here. Still trying. Still witnessing. Still loving. My body may be broken, but she is fierce in survival.

Guest Post by Jen J.

July 2025

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