Undiagnosed and Disregarded: The Hidden Struggles Spoonies Face in Healthcare14 min read

Struggling to get answers about your health? You’re not alone. The struggles of getting diagnosed with a chronic illness can feel endless—normal test results, dismissive doctors, and a system that often overlooks invisible conditions make the process even harder.

This hidden struggle isn’t just about finding a diagnosis—it’s about being seen, heard, and taken seriously in a system that often fails those with invisible illnesses. The journey to proper care is filled with roadblocks, and it’s a battle few understand unless they’ve lived it.

In this post, we’ll unpack why getting diagnosed and treated is so hard, reveal the systemic barriers that keep spoonies from receiving proper care, and share strategies to help you navigate this challenging process.

The System Isn’t Built for Spoonies

If you feel like you’ve been running into a wall trying to get a diagnosis, you’re not imagining it. The medical system is often designed to handle acute problems that are straightforward to diagnose and treat—broken bones, infections, and other visible conditions. But chronic illnesses, especially those that don’t show up in routine tests, fall through the cracks.

The complexity of invisible illnesses means you’re often forced to advocate for yourself in a system that doesn’t prioritize your experience. These struggles are more than just frustrating—they can have serious impacts on your physical and emotional well-being. Below are some of the most common barriers spoonies face in their healthcare journey and ways to tackle them.

The Struggles of Getting Diagnosed

1. Feeling Dismissed by Medical Professionals

Many spoonies share the experience of not being believed. When doctors tell you, “It’s just anxiety” or “You’re overthinking it,” it invalidates not just your symptoms but your entire lived experience. This dismissal disproportionately affects women, nonbinary individuals, and those with rare or misunderstood conditions.

This isn’t just frustrating—it’s dangerous. Being dismissed means delayed diagnoses, prolonged suffering, and in some cases, irreversible damage to your health. But while you can’t control how a doctor responds, you can arm yourself with tools to ensure your voice is heard.

How to Tackle It:

• Be Specific and Persistent: When describing symptoms, use clear, concise language. Avoid generalizations like “I feel off” and instead say, “I’ve had daily headaches for three months, and they worsen with light.”
• Bring a Support Person: A friend or family member can help you advocate, keep the conversation focused, and provide an extra set of ears during appointments.

Don’t Be Afraid to Push Back: If you feel dismissed, calmly but firmly ask follow-up questions like, “What else could this be?” or “Can you help me understand why this isn’t a concern?”

2. Endlessly Shuffling Between Tests and Specialists

Spoonies often find themselves stuck in a cycle of referrals, tests, and dead ends. You might see half a dozen specialists, each telling you something different—or worse, nothing at all. The waiting game feels endless, and every new test brings a mix of hope and dread.

This cycle takes a toll not just on your energy but on your trust in the medical system. It’s hard not to feel like a number on a chart when you’re constantly being passed around. But you don’t have to sit passively through this process. Small steps can help you regain some sense of control.

How to Tackle It:

• Track Everything: Create a medical binder with test results, appointment notes, and referrals. Having everything in one place helps you avoid repeating tests or losing important details.
• Ask the Right Questions: At each appointment, ask, “What’s the next step if this test comes back normal?” or “Are there alternative tests that might give us more clarity?”

Advocate for Timelines: Call offices to follow up on referrals or test results if you’ve been waiting longer than expected. Persistence can sometimes help you move up the queue.

3. Living in Limbo Without a Diagnosis

One of the hardest parts of being undiagnosed is the uncertainty. Without a diagnosis, it’s hard to validate your experience—even to yourself. You might start to question if you’re imagining your symptoms or if you’re being “too sensitive,” especially when doctors brush off your concerns.

This limbo is emotionally exhausting. It’s not just about wanting answers—it’s about needing a name for what’s happening to your body so you can finally take the next step toward treatment. Until that happens, it’s important to focus on what you can control.

How to Tackle It:

• Educate Yourself Thoughtfully: Research your symptoms using reputable sources to ask informed questions, but avoid going down a rabbit hole of worst-case scenarios.
• Seek Validation from Others: Join chronic illness communities where people share similar struggles. Hearing “Me too” can be incredibly reassuring.
• Focus on Symptom Management: Even without a diagnosis, work with doctors to address specific symptoms, such as pain, fatigue, or sleep issues.

The Emotional Toll of Being Disregarded

The process of seeking a diagnosis doesn’t just affect your physical health—it deeply impacts your mental and emotional well-being. Feeling dismissed, unheard, or invalidated can lead to feelings of isolation, hopelessness, and even grief for the life you had before your symptoms began.

These emotional struggles aren’t a sign of weakness—they’re a natural response to a system that often treats patients like puzzles to solve rather than people to care for. Acknowledging and addressing this emotional toll is just as important as managing your physical symptoms.

Thriving While Navigating the System

While you wait for a diagnosis or proper treatment, it’s essential to focus on your well-being. This isn’t about “thinking positive” or ignoring the struggle—it’s about finding ways to thrive despite it. By prioritizing rest, building a support network, and celebrating small wins, you can maintain your strength for the journey ahead.

What You Can Do While You Wait:

1. Rest Without Guilt: Give yourself permission to rest as much as you need. Managing your energy is critical to your overall health.
2. Set Boundaries with Loved Ones: Some people might not understand your journey. Protect your emotional energy by setting clear boundaries around unsolicited advice or invalidating comments.
3. Celebrate Progress: Whether it’s completing a test, getting a referral, or making it through a tough day, take time to acknowledge your resilience.

Finding Strength in Community

One of the most powerful tools in this process is connection. Other spoonies know what it’s like to feel disregarded by the medical system, and their stories, advice, and encouragement can be invaluable. Whether it’s through online groups, advocacy organizations, or even social media, finding your community can remind you that you’re not alone.

Support Your Advocacy Journey with Affirmations

Advocating for yourself is exhausting—mentally, emotionally, and physically. That’s why I created 10 Affirmations for Spoonies, a free resource to help you stay grounded, confident, and strong as you fight for the care you deserve.

These affirmations are specifically designed to help you:

• Speak up for your needs, even when it feels hard.
• Push back against invalidating comments.
• Remind yourself that your voice and experience matter.

Fill out the form below this post to download your free affirmations now.

Every small step you take toward advocating for yourself is a step toward thriving, even in the most difficult circumstances. You are not alone in this fight, and you deserve to be seen, heard, and cared for.

Until next time,