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When “Chronic and Incurable” Became My New Normal

It began subtly when I reached middle age around mid to late 50. At first I shrugged it off as normal life wear-and-tear.  Some mornings I’d wake with various symptoms so bad I could barely dress myself. Try bending over to tie your shoes or putting on a pair of pants! Image stumbling around the room until you find a safe anchor to support yourself in order to complete the task. The dizziness would sometimes hit while I was out, forcing me to find a place to sit until the risk of falling had passed. This evolved into anxiety over driving alone and further robbing me of my independence. Other symptoms like daily fatigue made everything heavier. Itching kept me scratching in the dark — it also altered the type of fabric I could wear and in turn, my signature style became “my anti-itch fashion statement”. Tinnitus hums through quiet moments, and body temperature swings left me bundling up in 80 degree weather or stripping off layers in frigid temperatures. Sleep deprivation turned nights into battles. Increasing anxiety made me snap at loved ones then feel guilty for hours. Brain fog had me avoiding any in-depth conversations. I’m more likely to just listen and nod than add to a discussion if the brain fog is clouding my ability to stay focused on a topic. Social plans evaporated—I’d cancel plans because I never knew which combination of symptoms would present at any point that day.

The symptoms never knock politely—they roll in like unpredictable waves, changing shape and intensity without warning. One day it might be crushing fatigue that pins me to the couch. Another day it could be a variety of body aches, muscle cramps, and joint pain that make even simple movements hurt. Without warning dizziness and feeling off balanced episodes strike, as I grip walls or furniture just to stay upright. Itching seems more often to increase at night and crawls across my skin where even the slightest brushing of the bedcovers activate an overall intense itch from feet to head. Excessive scratching breaks down the skin and causes sores or lesions.

Chronic, incurable illness can quietly reshape your entire world.

The search for answers felt endless and lonely. I visited several doctors through the years, describing the shifting symptoms. “It could be stress,” they suggested at first or shuffle me off to another specialist. However, my basic blood work indicated long term high liver enzymes but they offered no other test to find out what was causing the elevated numbers. Doctors seemed puzzled and conclude “Maybe it’s anxiety amplifying everything.” So in hindsight, it appears doctors use textbook protocols, an established set of rules, procedures, or processes. Most family doctors don’t see many autoimmune diseases routinely. Adding to that gap, the current data indicates these diseases hit women more often and are brushed off as a mental health problem. It’s an unfair pattern which is why bringing awareness is important for them to fix this mindset.

In 2023 a new PCP performed the normal, annual well check exam complete with all the necessary test and labwork. When the results came in she immediately referred me to a hepatologist specialist that instantly connected the dots. The pattern of unpredictable, multi-symptoms, the long term elevated liver enzymes and other autoimmune blood markers fit a chronic, incurable illness called PBC or Primary Biliary Cholangitis. Because too many years had passed without treatment for this specific disease I had already  progressed to compensated liver cirrhosis. My diagnosis was confirmed through non-routine bloodwork,  ultrasounds, CT scans, MRI, Fibroscan, and a liver biopsy. It was a relief to have a name for the chaos, but devastating to hear there was no cure, only management of the shifting waves. There’s no single fix, but Ursodiol has been the standard first-line treatment for PBC since its FDA approval in 1997. Iqirvo is the Leading Second-Line/Add-On Option that received FDA accelerated approval in June 2024 specifically to address the unmet need in UDCA non-responders or intolerant patients. It is indicated in combination with ursodiol for adults with inadequate response to ursodiol alone.

Other medicatons are used to control the progression of cirrhosis, as is lifestyle changes. For example a diet consisting of Antioxidant-Rich Fruits and Vegetables: Apples, berries blueberries, strawberries, oranges, pears, peaches, plums, broccoli, cauliflower, asparagus, tomatoes, leafy greens, peas, potatoes. Whole Grains and Complex Carbohydrates: Oats, quinoa, brown rice, buckwheat, whole-grain bread or pasta. Lean and Plant-Based Proteins: Poultry chicken, turkey, fish/seafood especially fatty fish like salmon, eggs, low-fat dairy or alternatives yogurt, cottage cheese, legumes beans, lentils, chickpeas, tofu. Sources of Healthy Fats: Olive oil, avocados, fatty fish salmon, nuts/seeds in moderation. Nuts and Seeds: Walnuts, almonds, pistachios, pumpkin seeds, flaxseeds, chia seeds, hemp seeds small portions to avoid excess calories/sodium. Coffee has the strongest evidence among beverages: Multiple meta-analyse show regular consumption 2–4 cups/day, caffeinated or decaf is linked lower risk of progression and reduced liver inflammation.  Changes in medications and diets should always be confirmed by your doctor.tion and additional scarring.
                        

What Adjusting Looks Like on a Daily Basis

Because my appetite can fluctuate due to the many symptoms and medications my body has to process I find small, frequent meals works best for me. For the fatigue, pacing is essential—I track energy like a budget, resting before the waves build. For the loss of balance, slow and steady movement helps with the dizziness. Gentle stretching helps without triggering fatigue. Meditation and  breathing exercises calms the mood swings and anxiety. I use white noise for tinnitus.  Memory aids—lists, phone reminders—for those short-term lapses. Social isolation eases when I connect on my terms when symptoms are flaring. Not everything works every time—the symptoms still shift — but these tools help me ride the waves instead of drowning in them.

Today, the prognosis is clear: this chronic, incurable illness means the waves will keep coming. Some weeks I manage four or five symptoms at once and still get through the day; others bring just fatigue and force total rest. The falling risk keeps me cautious, social isolation lingers when I have to say no, and the unpredictability is its own kind of exhaustion. Yet I’ve adapted—smaller plans, more grace for myself, and gratitude for the calmer stretches. That’s exactly why I’m sharing this. Too many of us live with these invisible, fluctuating symptoms—dismissed, isolated, searching for answers—without tools or understanding.

Awareness & Advocacy

Advocacy doesn’t have to be grand; it can be practical and doable even on rough days: Keep a simple symptom log noting which ones hit and when—it becomes powerful proof for doctors and helps spot patterns. Bring one-page summaries of common fluctuating symptoms to appointments to help providers see the full picture faster. Support research and policy when you can; every voice pushes for better recognition and funding.