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Helpful Things

Grief and Chronic Illness: Navigating the Loss of the Life You Once Knew

Grief and Chronic Illness: Navigating the Loss of the Life You Once Knew When people hear the word grief, they often think of the loss of a loved one. But grief is not limited to death. Grief shows up in many forms, and one that often goes unrecognized is the grief that comes with chronic illness. Living with a condition that changes your body, your abilities, and your daily life can feel like a series of quiet, ongoing losses. The Hidden Grief of Chronic Illness Chronic illness often strips away parts of life that once felt natural and easy—energy, independence, hobbies, careers, even relationships. It’s not uncommon to mourn the version of yourself you used to know: the body that felt strong, the dreams you had planned, or the routines that once gave you a sense of stability. This type of grief is complicated. Unlike traditional grief, which is often linked to a single event, the grief of chronic illness is ongoing. Every flare, setback, or new limitation can reopen that wound. There’s no tidy “five stages” to get through—it’s a cycle that may repeat, shift, and evolve as your health changes. Why It Feels So Overwhelming One of the hardest aspects of grieving through chronic illness is that the outside world doesn’t always see it. Friends and family may not fully understand the depth of your loss. They might say, “At least it’s not worse,” or, “You’ll get used to it.” While these words are usually well-intentioned, they can unintentionally invalidate the very real pain of losing the life you thought you’d have. This lack of acknowledgment can make you feel isolated, as though your grief is invisible. And yet, the emotions are as real as any other form of mourning—anger, sadness, denial, and even guilt. Allowing Space for Grief It’s important to know: grief is not weakness. Grieving doesn’t mean you’ve given up. It means you’re human. Allow yourself to acknowledge what’s been lost. You don’t need to minimize your feelings just because someone else “has it worse.” Your pain matters. Some gentle ways to honor your grief might include: Journaling your thoughts and emotions. Speaking honestly with a trusted friend or therapist. Creating rituals of release—like lighting a candle for the parts of life you’ve had to let go. Practicing self-compassion, reminding yourself that mourning is a natural response to change. Finding New Ground While grief will always be part of chronic illness, it can coexist with hope. Over time, many people discover new ways to find joy and meaning, even within limitations. That doesn’t erase the losses, but it can create space for acceptance and growth. Living with chronic illness often requires reimagining life, rather than giving up on it. You may discover new passions, build deeper empathy, or connect with others who share similar struggles. These shifts don’t cancel out the pain, but they can help you carry it with more balance. A Final Reminder If you live with chronic illness and grief, you are not alone. Your feelings are valid, your losses are real, and your resilience is profound. Healing isn’t about pretending everything is fine—it’s about finding ways to live fully in the reality you’ve been given, while honoring both the grief and the beauty along the way.

August 28, 2025 No Comments

My Story

Gaslit in the ER

When the ER Feels Like a War Zone: A Chronic Illness Perspective Living with a chronic illness is already a daily battle—physically, mentally, emotionally. But what happens when the very place we’re told to go for help becomes a source of deeper trauma? For many of us, the emergency room doesn’t feel like a lifeline. It feels like a battlefield. One where we’re gaslit, dismissed, and treated more like an inconvenience than a human being in distress. If you’ve been there, you know exactly what I mean. Why I Avoid the ER at All Costs My own experience has left scars that run deeper than my diagnosis. I remember vividly one of my worst flare-ups. My heart rate had dropped into the low 30s. I was dizzy, barely able to function, throwing up everything I ate. Acid reflux was tearing my throat apart—it felt like lava pouring upward from my stomach. I was losing weight rapidly, and my front teeth had already started to erode from the constant acid. By all medical standards, I should have gone to the emergency room. But I didn’t. Why? Because I couldn’t face the trauma of walking through those doors again. A Memory That Still Stings I remember one time in the ER when I was transferred by ambulance from a smaller hospital to a larger, well-known facility—two hours away—because of how serious my condition appeared. After sitting there for over six hours without being seen, I was finally approached by a doctor who completely dismissed me. I was told nothing was wrong and that I was going to be sent home. No answers. No compassion. Just cold detachment. When I managed to speak with another doctor alone, I voiced my deep frustration. I told him how disrespected I felt—how the first doctor spoke to me as if I were wasting everyone’s time, making me feel stupid for even being there. I asked him, why would the other hospital rush me to this one by ambulance if it were “nothing”? That second doctor went and spoke with her. She eventually returned to speak with me—not to apologize, mind you—but to say something that still stings to this day: “If you think you need to be in the hospital, we’ll admit you.” Can you imagine? Being made to feel like I was begging for care, like I was manipulating the system just to be admitted. Talk about guilt-tripping a patient in crisis. It’s Not Just Physical—It’s Emotional These kinds of experiences create lasting trauma. The ER is supposed to be a place of urgent care. But when you live with a chronic illness, it often becomes a place of emotional harm. You’re left feeling invisible, brushed aside, and emotionally bruised. You stop feeling like a person in need. You start feeling like a problem to be pushed out the door. The System Isn’t Just Broken—It’s Starving I understand that hospitals are understaffed. Nurses and doctors are burned out. But the issue goes deeper than that. Hospitals don’t want to spend the money. It’s not just about a staffing shortage—it’s about budgets, bureaucracy, and priorities. And patients like me end up paying the price, not just in dollars, but in pain, fear, and trauma. “It’s not in the budget.”But what about the cost to our lives? So What Do We Do? We speak out. We share our stories. We raise our voices until the system hears us. Because no one—especially someone already suffering—should be made to feel like they don’t deserve care. This isn’t just my story. It’s our story. For every person with an invisible illness who has ever left the ER in tears, feeling worse than when they arrived—you’re not alone. You are worthy of care. You are worthy of compassion. And you are definitely not crazy for advocating for yourself.

July 30, 2025 No Comments

My Story

My Chronic Beginning 2

I had been counting down the days to finally have my hiatal hernia repaired. I looked forward to getting back to work, earning a paycheck again, and being around my coworkers and friends. You don’t realize how much you can miss work—routine, purpose, connection—until your health takes it away from you. When surgery day came, things didn’t quite go as planned. What was supposed to be a 3-hour procedure turned into a 5-hour operation, followed by another 2 hours just to get the pain under control. And let me tell you—this pain was no joke. Honestly, it was more intense than giving birth to my nearly 10-pound baby girl. This experience was not only physically exhausting but also emotionally overwhelming. I spent 5 long days in the hospital and couldn’t wait to get home. Once I got home from surgery, things took an unexpected and ugly turn. After a few days on a liquid diet, I was supposed to slowly transition back to eating normally. But nothing about it felt normal. In fact, it felt like my body was completely shutting down. I couldn’t even keep down water. Every sip, every bite—no matter how small—came right back up. I was constantly vomiting, and the acid reflux was far worse than I ever imagined. It wasn’t just uncomfortable—it was terrifying. At times, it felt like I was literally drowning in acid. Lava-like reflux poured into my throat, burning its way up and stealing my breath. There were moments where I couldn’t breathe at all—like my airway was sealed off by fire. It was one of the most frightening things I’ve ever experienced. Shortly after my surgery, things took a serious turn for the worse. I later found out that my vagus nerve had been damaged during the procedure—a nerve that plays a critical role in controlling digestion. A Gastric Emptying Study confirmed the result of that damage: I now have Gastroparesis, which means my stomach is partially paralyzed and no longer empties food the way it should. During the test, I ate radioactive eggs and toast (yes, really), and four hours later, only 10% of the meal should have remained in my stomach. In my case, an alarming 93% was still sitting there. From that point on, I was in and out of the ER—admitted three times between July and December. By the end of the year, I was dropping weight dangerously fast because I couldn’t keep anything down. I was desperate and began pleading with doctors to consider tube feeding as a way to save my life. I’ll talk more about my December hospital stay in a separate post, but here’s the part that still stuns me: as someone who once battled anorexia and fought tooth and nail against the idea of being tube-fed, I was now asking for it. I mean, it had to be bad—really bad—for me to reach that point, right? It wasn’t until February that I finally received an NJ feeding tube. I came into the ER with a heart rate dropping to 20 bpm, lightheaded, dehydrated, and severely malnourished. I felt awful—like my body was just giving up. A doctor finally came to me and said, “It’s time we think about tube feeding.”I looked at her in disbelief and said, “You think? I’ve been asking for this since December.” She was genuinely surprised. But even with tube feeding, the battle isn’t over. Since then, I’ve been in and out of the hospital with clogged feeding tubes. Every time it happens, I end up admitted again because my body starts to crash within two days of missing my nutrition. Eventually, they transitioned me to a more permanent solution—a GJ tube. It allows my feeds to go directly into my small intestine, while the gastric (G) portion lets me vent my stomach when it becomes too upset. Let me tell you, having a GJ tube is a whole other beast. It leaks. It’s sore. It clogs. I even spent the night in the hospital just to get a replacement. That experience was awful. What I’m learning is this:Being tube-fed keeps me alive and not much more.I feel a bit better, yes—but it’s not a cure. My life has changed in ways I never imagined. I’ve now been on and off disability from work for over a year. After much urging from everyone around me, I finally started the heartbreaking process of applying for Social Security Disability. That alone is a painful reality. I miss working. I miss contributing. I miss being around people. Instead, I spend most days home alone, completely wiped out from just existing. This isn’t the life I had planned—but it’s the life I have now. And somehow, I have to find a way to make the best of it.

July 25, 2025 No Comments

Helpful Things

The word that makes you cringe

Let’s talk about something that might make some of you in the chronic illness community cringe a little: Yoga. Yep, I said it. I know, I know—it’s one of those words on the “things not to say to someone with a chronic illness” list. Trust me, I’ve rolled my eyes too. But hear me out. I’m not here to tell you that yoga will cure you, fix your symptoms, or magically make life easier. What I am here to say is that for me, yoga became less about the poses and more about reconnecting with a body I often feel disconnected from. It’s not about flexibility or strength—it’s about breath, presence, and offering my body kindness, even when it feels like it’s fighting me. If you’re curious, stick around. If you’re skeptical, I get it—and you’re not alone. This isn’t about pushing yoga; it’s about sharing how I found a way to redefine it for my body and my reality. How Yoga Can Help When You Live with a Chronic Illness Living with a chronic illness often means feeling like your body has betrayed you. It can be frustrating, isolating, and exhausting. For many of us, movement becomes limited, and even small tasks can feel monumental. That’s why the idea of yoga might feel completely out of reach—or even offensive. But yoga, when approached gently and intentionally, can actually become a powerful tool for healing—not the kind that “fixes” you, but the kind that helps you reconnect with yourself. Here’s how yoga can support someone with a chronic illness: 🧘‍♀️ Breathwork (Pranayama):One of the core elements of yoga is focused breathing. When you’re in pain or dealing with fatigue, your breath becomes shallow and tight. Learning how to breathe deeply and intentionally can help calm the nervous system, reduce anxiety, and even improve oxygen flow—something many chronic illness warriors struggle with. 🧘‍♀️ Gentle Movement:Yoga doesn’t have to be fast-paced or acrobatic. Chair yoga, restorative yoga, or even just a few mindful stretches in bed can help loosen stiff joints, reduce muscle tension, and improve circulation—without pushing your body past its limits. 🧘‍♀️ Mind-Body Connection:Chronic illness can make you feel disconnected from your body, like you’re just managing symptoms rather than living in your skin. Yoga helps rebuild that connection, encouraging you to listen to your body rather than fight it. You begin to move with your body instead of against it. 🧘‍♀️ Mental and Emotional Support:Yoga isn’t just physical. It’s also a mental and emotional practice. The meditative aspects of yoga can help reduce stress, ease depression, and create a sense of calm in the middle of chaos. When so much feels out of your control, finding a few quiet moments to breathe and be present can be powerful. 🧘‍♀️ It’s Adaptable:There’s no “right way” to do yoga. It can be customized to meet you where you are—whether that’s lying flat in bed or seated in a wheelchair. You don’t have to “look” like a yogi to benefit from the practice. Final Thoughts:Yoga won’t cure your illness. But it can offer relief, even in small ways. It can be a tool—not a fix—for finding moments of peace, movement, and self-compassion. And that, in a life full of challenges, can be enough to make a difference.

July 24, 2025 No Comments

My Story

My Chronic Beginning

The Moment My Health Took a Turn I was in the midst of rebranding my life, stepping into a new chapter with purpose and passion. I had become a certified Reiki Practitioner and was well on my way to earning my Reiki Master certification. I had also completed training as a Meditation Teacher and a Kundalini Yoga Instructor. It felt like everything was finally aligning—until my health began to shift in ways I couldn’t ignore. August 2023 marked the quiet beginning of everything that was to come. I went to our local emergency room, convinced I had bronchitis. After waiting six exhausting hours in the lobby, I finally flagged down a nurse and said, “I’ve been here over six hours—I’d rather go home and die than wait another minute.” The urgency in my voice must have struck a chord, because I was called back almost immediately. The doctor saw me for less than two minutes and gave a rushed diagnosis: “Your hiatal hernia is stable, and you have bronchitis.” My heart skipped a beat. “Wait—what hiatal hernia?” I asked, confused. But just as quickly as it was mentioned, it was dismissed. I didn’t think about it again—until everything changed in early 2024. By December, what started as bronchitis had progressed into full-blown pneumonia. Months of relentless coughing had taken a toll on my body, and my hiatal hernia had grown significantly. Concerned, my doctor began ordering a series of tests to rule out other conditions. I went through a Pulmonary Function Test, which confirmed I had COPD with asthma. A stress test, CT scans of my chest (both with and without contrast), an echocardiogram, EKG, and extensive bloodwork followed. Eventually, I was referred to a local gastrointestinal surgeon for the hernia. But after reviewing my case, the surgeon ghosted me completely—because the hernia was, in his words, “too large” for him to handle. Desperate for answers and still struggling to breathe, I tried another local emergency room and even visited a nurse practitioner—but nothing helped. That’s when I was urged to make the two-hour drive to Vanderbilt Hospital’s emergency department in Nashville, Tennessee. It turned out to be the turning point I didn’t know I needed. After more chest scans, the doctors immediately recognized the severity of my condition. It was urgent—I needed to see a thoracic surgeon as soon as possible. Miraculously, I was scheduled for an appointment within just two days—something almost unheard of in today’s overwhelmed healthcare system. My appointment at Vanderbilt left me shaken. The surgeon explained that my hiatal hernia was one of the largest they had ever seen—and unusually located on the right side, rather than the left. Even more alarming, my entire stomach and part of my large intestine had migrated into my chest cavity, compressing my lungs and making it harder and harder to breathe. Although the consultation was brief, the gravity of what was happening to my body was overwhelming. Unfortunately, while I had finally found someone who could help, the surgery couldn’t be scheduled right away. For the next two months, I was forced to cope with the daily reality of suffocating symptoms, as my stomach continued to suffer damage in a place it was never meant to be. Eventually, I had no choice but to go on short-term disability. My health had declined too far to continue working—my body simply couldn’t keep up. Surgery day came and little did I know, it was about to change the direction of my life.

July 23, 2025 No Comments

Grief and Chronic Illness: Navigating the Loss of the Life You Once Knew

Gaslit in the ER

My Chronic Beginning 2

The word that makes you cringe

My Chronic Beginning

TAG CLOUD