This is my story – not just the medical timeline, but the real, messy, complicated journey of how chronic illness crept into every corner of my life and changed everything. If you’re newly diagnosed, struggling with mysterious symptoms, or watching your own health evolve in confusing ways, maybe parts of my story will feel familiar. If you love someone on this journey, this is what it really looks like from the inside – the fear, the grief, the small victories, and the daily adaptation that becomes your new normal.
“I never imagined that something as simple as getting out of bed, going to work, or even just existing could feel like a daily battle against my own body. But here I am, navigating life with a chronic illness, learning how to work, rest, and survive in a world that never seems to slow down.”
The Beginning: When Your Body First Betrays You
The Graves’ Disease Diagnosis
I was first diagnosed with Graves’ Disease after experiencing symptoms from an overactive thyroid. At the time, I was given two options to “fix” my condition: surgery to remove my thyroid or radioactive iodine treatment.
What Graves’ Disease really meant:
- My immune system was attacking my thyroid gland
- The overactive thyroid was causing rapid heartbeat, anxiety, weight loss, and heat intolerance
- This wasn’t just a “thyroid problem” – it was my first encounter with autoimmune disease
- The treatment options would have permanent, life-altering consequences
The Decision I Regret
I was young and, to be honest, I didn’t realize I should have researched my choices more. I also don’t know what other options were available back in 2008. I chose radioactive iodine treatment because it was the quickest solution and got me back to work faster.
What I wish I’d known then:
- The long-term consequences of destroying my thyroid
- How thyroid function affects every system in your body
- That “quick fixes” in medicine often come with long-term costs
- The importance of getting second opinions for major medical decisions
- That asking for time to research wasn’t unreasonable
The pressure to get back to work: This represents a broader problem with chronic illness – the pressure to choose treatments based on productivity rather than long-term health outcomes.
The Immediate Aftermath
A year later, I was diagnosed with depression and anxiety, along with my now underactive thyroid. That’s also when I started struggling with brain fog—something I didn’t even have a name for at the time.
The cascade effect of thyroid destruction:
- Depression and anxiety: Often linked to thyroid dysfunction
- Brain fog: Cognitive symptoms that doctors rarely warn you about
- Underactive thyroid: Requiring lifelong medication replacement
- Metabolic changes: Affecting weight, energy, and overall health
The Cognitive Struggles Begin
It’s a frustrating mental haze that makes it hard to focus, recall information, or even hold conversations. My husband would get frustrated with me because I couldn’t remember things that once came easily. If I didn’t write things down in a calendar, I’d completely forget important dates that I should have easily remembered.
What brain fog actually feels like:
- Words disappearing mid-sentence
- Walking into rooms and forgetting why you’re there
- Reading the same paragraph multiple times without comprehension
- Feeling like you’re thinking through thick cotton
- Forgetting important dates, appointments, and conversations
- Difficulty following complex instructions or multi-step tasks
The relationship impact: When cognitive symptoms affect memory and communication, loved ones often don’t understand that this is a medical symptom, not carelessness or lack of caring.
The False Hope
At first, I thought treating my thyroid would be the end of my struggles. I knew I’d have to take medication for the rest of my life, but taking one pill daily seemed manageable. And it was… for a little while.
Why I thought it would be simple:
- Doctors presented it as straightforward hormone replacement
- I didn’t understand the complexity of thyroid function
- No one warned me about potential complications
- I believed medical problems had clear solutions
The reality of thyroid medication:
- Finding the right dose can take months or years
- Different brands affect people differently
- Absorption can be affected by foods, other medications, and illness
- Many people never feel “normal” again despite “normal” lab values
- Other health problems can complicate thyroid management
The Escalation: When One Condition Becomes Many
The Respiratory Complications
A few years later, I started having allergy and asthma problems. I needed inhalers, and for years, I relied on over-the-counter allergy medications. Eventually, my body got used to them, and I had to switch to stronger prescription meds just to function.
The connection between thyroid and immune function:
- Autoimmune conditions often cluster together
- Thyroid dysfunction can affect respiratory health
- Chronic inflammation creates a cascade of symptoms
- The immune system becomes increasingly reactive
The medication treadmill: This pattern of needing stronger and stronger medications to manage symptoms becomes a common theme in chronic illness.
The Turning Point
But it was about 10 years ago that things really started going downhill fast.
Why chronic illness often accelerates:
- Accumulated damage from ongoing inflammation
- Stress on body systems from managing multiple conditions
- Side effects from long-term medication use
- Aging combined with chronic disease
- Undiagnosed conditions finally manifesting
The Weight Struggle
I’ve always struggled with my weight, but it suddenly became worse than ever. Carrying around extra weight isn’t just about appearance—it makes everything harder. Basic movements, energy levels, breathing—it all gets impacted in ways people don’t always realize.
How chronic illness complicates weight management:
- Thyroid dysfunction slows metabolism significantly
- Medications often cause weight gain as side effects
- Reduced activity from pain and fatigue leads to muscle loss
- Inflammation affects metabolism and hunger signals
- Depression can affect eating patterns and motivation
- Sleep disruption affects hormones that regulate weight
The physical impact of weight gain with chronic illness:
- Increased joint stress worsening pain
- Reduced stamina for daily activities
- Breathing difficulties during exertion
- Heat intolerance and sweating
- Reduced mobility and flexibility
- Clothing and seating accommodations needed
The Exhaustion That Sleep Can’t Fix
Then came the exhaustion—the kind that no amount of sleep can fix. I’d spend entire weekends sleeping just to recover from the workweek. But instead of feeling rested, I just felt guilty—like I had wasted all my free time. There were so many things I wanted to do, but I just didn’t have the energy.
Understanding chronic fatigue:
- Different from normal tiredness: Not relieved by rest
- Post-exertional malaise: Feeling worse after activity
- Unrefreshing sleep: Waking up exhausted despite hours of sleep
- Cognitive fatigue: Mental tasks become exhausting
- Physical heaviness: Feeling like you’re moving through thick mud
The guilt cycle:
- Guilt about spending weekends sleeping
- Guilt about missed social activities
- Guilt about reduced productivity
- Guilt about being a “burden” on family
- Guilt about not being the person you used to be
The Symptom Cascade: When Your Body Becomes a Stranger
The Pain Begins
Then the random aches and pains started—ones I had never experienced before. My brain fog got worse, and at the time, I didn’t think that was even possible.
The progression of fibromyalgia symptoms:
- Widespread pain: Affecting muscles, joints, and soft tissues
- Worsening cognitive symptoms: Brain fog becoming more severe
- Sleep disturbances: Both falling asleep and staying asleep
- Increased sensitivity: To light, sound, touch, and temperature
- Digestive issues: Often accompanying fibromyalgia
The Sleep Problems Multiply
I started waking up sore from sleeping in one position for too long. I developed Restless Leg Syndrome (RLS), followed by muscle twitches that happened all day and night.
How sleep becomes another source of symptoms:
- Morning stiffness: Waking up in more pain than when you went to bed
- Pressure point sensitivity: Unable to lie in one position for long
- Restless legs: Uncomfortable sensations preventing sleep
- Muscle twitches: Involuntary movements disrupting rest
- Temperature regulation: Being too hot or cold affecting comfort
The sleep-pain cycle:
- Poor sleep worsens pain
- Pain makes sleep difficult
- Medications for pain can affect sleep quality
- Sleep aids can worsen morning grogginess
- The cycle becomes self-perpetuating
The Escalating Pain Experience
Then came the muscle cramps, the burning sensations, the pinprick pains—sometimes all over my body. The worst spots? My back and feet. Those are the ones that make me jump every time.
Different types of fibromyalgia pain:
- Muscle cramps: Sudden, intense contractions
- Burning sensations: Feeling like internal heat or fire
- Pinprick pains: Sharp, stabbing sensations
- Allodynia: Pain from normally non-painful touch
- Hyperalgesia: Increased sensitivity to painful stimuli
The unpredictability factor: Never knowing when or where pain will strike makes planning and daily activities extremely challenging.
The Hand Problems: My Greatest Fear
And now, the problems with my hands scare me the most. My hands are always sore and achy, but now my thumbs have started locking up on me. They’ll freeze in a flexed position, and when I try to stretch them out, sometimes I can, sometimes I can’t. When I do manage to move them, the pain is unbearable, and there’s an awful clicking noise—like bones grinding together.
Why hand problems are particularly frightening:
- Independence concerns: Hands are essential for self-care
- Work implications: Most jobs require hand function
- Daily living impact: Cooking, cleaning, writing, typing
- Progressive nature: Fear that symptoms will worsen
- Limited treatment options: Few effective interventions
The practical impact:
- Difficulty opening jars, bottles, and packages
- Pain when typing or writing
- Problems with fine motor tasks like buttoning clothes
- Weakness affecting grip strength
- Interference with hobbies and interests
How compression gloves help:
- Provide gentle pressure to reduce swelling
- Support joint alignment
- Improve circulation
- Reduce stiffness
- Offer warmth for comfort
The Diagnosis: Finally Having a Name
The Relief and Terror of Diagnosis
After years of dealing with all of this—visiting different doctors and getting different answers—I was finally diagnosed with fibromyalgia.
In one way, the diagnosis made me feel better because I finally had an answer that made sense. But in another way, it terrified me because there isn’t much that can be done about it.
The complex emotions of chronic illness diagnosis:
Relief:
- Finally having a name for your symptoms
- Validation that you’re not “crazy” or “making it up”
- Understanding that others experience similar symptoms
- Access to specific treatments and resources
- Connection with support communities
Fear:
- Learning there’s no cure
- Uncertainty about disease progression
- Limited treatment options
- Impact on future plans and goals
- Financial implications of ongoing treatment
Grief:
- Mourning the healthy life you expected
- Loss of former capabilities and activities
- Changed relationships and social connections
- Altered career prospects and goals
- The person you used to be
Understanding Fibromyalgia
What fibromyalgia actually is:
- A chronic pain condition affecting the central nervous system
- Characterized by widespread musculoskeletal pain
- Often accompanied by fatigue, sleep problems, and cognitive issues
- More common in women, typically diagnosed between ages 20-50
- Often coexists with other conditions like depression, anxiety, and autoimmune diseases
Why it’s difficult to treat:
- No single cause has been identified
- Symptoms vary greatly between individuals
- Treatments that work for one person may not work for another
- Often requires a multi-modal approach
- Research is ongoing but limited
Accepting Limitations: The Hardest Lesson
Confronting Physical Reality
Coming to terms with my limitations has been one of the hardest parts of this journey. I just can’t do everything I used to. I don’t have the energy, and my body is in so much constant pain that I have to carefully choose what I can and can’t handle every day.
What accepting limitations actually means:
- Energy budgeting: Treating energy like a finite resource
- Priority reassessment: Focusing on what’s most important
- Flexibility planning: Having backup options for bad days
- Boundary setting: Saying no to activities that worsen symptoms
- Identity adjustment: Redefining yourself beyond physical capabilities
The Mental vs. Physical Battle
It’s frustrating because, in my mind, I want to do everything—but I’m stuck in a body that won’t let me.
The disconnect between mind and body:
- Mental capabilities often remain intact while physical abilities decline
- Desire to maintain previous activity levels
- Frustration with the gap between intention and capability
- Grief over lost physical abilities
- Struggle to adjust expectations and goals
Learning to work with your body instead of against it:
- Recognizing early warning signs of overexertion
- Planning activities around energy levels
- Using assistive devices without shame
- Modifying rather than abandoning activities
- Celebrating adapted achievements
Career Adjustments: Health vs. Financial Security
Leaving the Toxic Environment
Recently, I had to leave a job because the toxic work environment, combined with 10-hour days, was completely wrecking my health.
How toxic workplaces affect chronic illness:
- Stress worsening symptoms: High-stress environments trigger flares
- Long hours depleting energy: Extended workdays prevent recovery
- Lack of accommodation: Inflexible policies worsening health
- Emotional toll: Workplace stress affecting mental health
- Physical demands: Requirements exceeding physical capabilities
The Difficult Job Search
When I started looking for a new job, I knew I couldn’t take anything that required me to work more than eight hours a day or stand for long periods.
That made the job search even more stressful. It was exhausting trying to find something I knew I’d be able to physically handle.
Chronic illness job search challenges:
- Limited options: Many jobs incompatible with health needs
- Disclosure dilemmas: When and how to reveal limitations
- Accommodation uncertainty: Not knowing if employers will be supportive
- Energy depletion: Job searching itself being exhausting
- Financial pressure: Needing income while prioritizing health
The Trade-offs
But after a few months, I finally found a great job with a supportive work environment. The only problem? The pay was much lower than what I was used to.
So, I had to make another adjustment. Finding a part-time job that I could balance with my full-time job.
The chronic illness financial reality:
- Often having to choose health-friendly jobs over higher-paying ones
- Need for multiple income sources due to reduced earning capacity
- Medical expenses increasing financial pressure
- Difficulty building savings due to health-related costs
- Constant balance between financial needs and health preservation
Why I Started This Blog: Turning Pain into Purpose
The Vision for Community
I have high hopes for this blog. Not only does it give me a place to share my struggles and wins, but I hope it also becomes a community. Where others can share their stories, too.
The therapeutic value of sharing your story:
- Processing experiences: Writing helps make sense of complex emotions
- Reducing isolation: Connecting with others who understand
- Creating meaning: Finding purpose in difficult experiences
- Helping others: Using personal experience to support others
- Building advocacy: Raising awareness about chronic illness realities
The Need for Real Community
It’s not easy navigating a world that runs at full speed when you’re stuck in a body that doesn’t even want to move.
What chronic illness community provides:
- Validation: Others who truly understand your experience
- Practical support: Tips and resources from people who’ve been there
- Emotional support: Understanding during difficult times
- Advocacy: Collective voices for better understanding and treatment
- Hope: Examples of others thriving despite challenges
My Goals for This Space
💜 I hope this blog becomes a place where people can connect, support each other, and feel less alone.
💜 I want this to be a safe space. Free from judgment, criticism, and negativity.
💜 Everyone is on their own journey, and we should lift each other up however we can.
Creating inclusive community:
- Acknowledging diverse experiences: Every chronic illness journey is unique
- Avoiding competitive suffering: Not comparing whose situation is “worse”
- Supporting all stages: From newly diagnosed to long-term management
- Welcoming questions: Creating space for learning and growth
- Celebrating victories: Recognizing achievements at all levels
Lessons Learned: What This Journey Has Taught Me
About the Healthcare System
What I’ve learned about navigating medical care:
- You must be your own advocate
- Second opinions are not just acceptable, they’re necessary
- Doctors don’t always have answers, and that’s okay
- Research your conditions and treatment options
- Find providers who listen and take you seriously
- Keep detailed records of symptoms and treatments
About Relationships
How chronic illness affects relationships:
- Some people will surprise you with their support
- Others will disappoint you with their lack of understanding
- Communication about your needs is essential
- Boundaries are necessary for your health
- Quality relationships matter more than quantity
- Your true friends will adapt with you
About Identity and Self-Worth
Redefining yourself beyond illness:
- You are more than your diagnoses
- Productivity doesn’t determine your worth
- Adaptation is a form of strength
- Small victories are still victories
- Rest is not laziness – it’s healthcare
- Your experience has value and can help others
About Resilience
What resilience actually looks like:
- Asking for help when you need it
- Adapting your goals to match your capabilities
- Finding joy in smaller moments
- Continuing to hope despite setbacks
- Building community and connection
- Using your experience to help others
For Others on This Journey
If You’re Newly Diagnosed
What I wish I’d known at the beginning:
- It’s okay to grieve: Mourn the life you expected to have
- Learn everything you can: Become an expert on your condition
- Find your people: Connect with others who understand
- Pace yourself: Recovery and adaptation take time
- Advocate for yourself: You know your body best
- Hold onto hope: Treatment and management improve over time
If You’re Still Seeking Answers
For those still looking for diagnosis:
- Trust your instincts: You know when something isn’t right
- Keep detailed records: Document symptoms, patterns, and triggers
- Don’t give up: The right doctor and diagnosis may take time to find
- Seek specialists: Sometimes general practitioners aren’t enough
- Get second opinions: Different perspectives can provide new insights
- Take care of yourself: Manage symptoms even without a diagnosis
If You’re Supporting Someone
How to help a loved one with chronic illness:
- Listen without trying to fix: Sometimes just being heard helps
- Learn about their condition: Understanding shows you care
- Offer specific help: “Can I bring dinner?” vs. “Let me know if you need anything”
- Be patient with limitations: Symptoms can change day to day
- Don’t take things personally: Bad days aren’t about you
- Continue to include them: Adapt activities rather than excluding them
Resources That Have Helped Me
Medical Resources
Finding good healthcare providers:
- Rheumatologists for autoimmune and pain conditions
- Endocrinologists for thyroid management
- Pain management specialists for comprehensive pain care
- Mental health professionals familiar with chronic illness
- Patient advocates for complex cases
Educational Resources
Reliable information sources:
- National Fibromyalgia Association
- American Thyroid Association
- Graves’ Disease and Thyroid Foundation
- Arthritis Foundation
- National Institutes of Health
Support Communities
Where to find understanding:
- Online support groups for specific conditions
- Local chronic illness support meetings
- Social media communities (#chronicillness, #fibromyalgia)
- Chronic illness blogs and podcasts
- Patient advocacy organizations
Practical Tools
Items that have made daily life easier:
- Compression gloves for hand pain
- Ergonomic tools for daily tasks
- Heating pads and ice packs for pain management
- Organization systems for medications
- Comfortable seating and bedding options
The Ongoing Journey
What I’m Still Learning
Chronic illness is an ongoing education:
- Symptom management: Constantly adjusting strategies
- Treatment options: Staying informed about new developments
- Self-advocacy: Improving communication with healthcare providers
- Boundary setting: Getting better at protecting my energy
- Community building: Finding and creating supportive spaces
Hope for the Future
Why I remain optimistic:
- Medical advances: New treatments and understanding developing
- Community growth: More people sharing their experiences openly
- Awareness increasing: Greater understanding of chronic illness
- Personal growth: Continued learning and adaptation
- Purpose found: Using experience to help others
You Are Not Alone
If you’ve made it this far, thank you for reading.
If you’re struggling with your own chronic illness, I want you to know:
✨ You are not alone. Millions of people navigate chronic illness daily, and your experience is valid.
✨ There are people who understand what you’re going through. While your specific situation is unique, the feelings and challenges are shared by many.
✨ They may not be your family or friends, but they are out there. Sometimes understanding comes from unexpected places – online communities, support groups, or blogs like this one.
Additional truths I want you to know:
- Your pain is real, even when others can’t see it
- Your limitations are valid, even when they’re invisible
- Your feelings about your illness are normal and acceptable
- Your journey is your own, and there’s no “right” way to have chronic illness
- Your voice matters, and your story could help someone else
- You are stronger than you realize, and you’re doing better than you think
Moving Forward Together
This blog exists because I needed community and suspected others did too. It’s built on the belief that sharing our real experiences, from the messy, complicated, to the sometimes beautiful reality of chronic illness. This creates connection and understanding.
My commitment to this community:
- Honesty: Sharing the real experience, not just the highlights
- Support: Creating space for all experiences and emotions
- Education: Providing useful information and resources
- Advocacy: Working to increase understanding and support
- Hope: Demonstrating that meaningful life is possible with chronic illness
Your chronic illness journey is unique, but you don’t have to walk it alone. Whether you’re at the beginning of diagnosis, years into management, or supporting someone you love, there’s a place for you here.
Together, we can change the narrative around chronic illness from one of limitation and despair to one of adaptation, community, and hope. We can create understanding where there was ignorance, support where there was isolation, and strength where there was only struggle.
Your story matters. Your experience has value. You belong here.
💬 Let’s start a conversation.
✨ What’s your biggest challenge living with chronic illness? ✨
Drop a comment below, and let’s talk. Your experience might help someone else feel less alone in their journey. 💜
Chronically Hustling 