To Get a Diagnosis or Not to Get a Diagnosis?
When living with ongoing symptoms like fatigue, pain, dizziness, or cognitive fog, many people start wondering:
Should I push for a formal diagnosis—or just manage my symptoms and move on with my life?
This is a deeply personal decision. For some, diagnosis brings clarity and access to support. For others, the process itself becomes a source of distress.
Here’s a breakdown of why a diagnosis matters—and why, if you need to press pause for your own wellbeing, that’s okay too.
🌱 Why Getting a Diagnosis Matters
✅ Validation
After months (or more likely years) of being told “it’s all in your head,” or “your test results are all normal,” a diagnosis can feel like proof that what you’re experiencing is real. It can be life-changing to hear someone finally say, “there is a reason you are feeling this way.”
📄 Access to Accommodations
A formal diagnosis:
Supports applications for disability support (e.g., NDIS, DSP, Centrelink, school/uni adjustments)
Enables medical leave or workplace flexibility
Provides evidence for funding or referrals under Medicare, NDIS, or insurance
Without a diagnosis, many systems won’t recognise or accommodate your needs—no matter how real your symptoms are.
💬 Community and Connection
A diagnosis can connect you with others facing similar challenges. Whether through online forums, local support groups, or condition-specific organisations, it can be comforting and empowering to say, “This is what I have,” and find people who truly get it.
📚 Better Health Outcomes
Getting a diagnosis:
Helps clinicians tailor treatment and monitoring
Reduces the risk of missed or misdiagnosed conditions (e.g., POTS vs anxiety, EDS vs fibromyalgia)
Provides a roadmap for allied health referrals (EPs, physios, OTs, psychologists, etc.)
Many conditions—like hypermobility spectrum disorders, autoimmune disease, and dysautonomia—require long-term care. Without a diagnosis, you may not get the screenings or preventative care you need to avoid worsening symptoms or complications.
🧠 Clarity and Self-Understanding
Sometimes the biggest shift isn’t physical—it’s emotional. Finally understanding why your body reacts the way it does can change how you treat yourself. It reduces shame, builds compassion, and empowers you to work with your body rather than constantly feeling like you’re failing it.
⏸️ Why You Might Pause the Diagnostic Process
❗Note: These reasons are not arguments against diagnosis—but rather, why someone might delay the process.
💸 Cost and Accessibility
Navigating the health system often means:
Multiple specialist appointments (often private)
Repeating the same story over and over
Long waitlists and high out-of-pocket costs
If your energy or budget is limited, it’s okay to pause and focus on things within your control, like pacing, gentle movement, or nutrition, until you’re able to revisit the medical route.
🧠 Mental Health and Medical Trauma
For many, the road to diagnosis is paved with invalidation.
The trauma of being dismissed, disbelieved, or misdiagnosed can lead to medical PTSD, anxiety, and burnout.
In these cases, it may be healing to step away and build emotional safety and internal resilience first—with the intention of returning to the process later with better boundaries and support.
🚫 "There’s No Cure" ≠ "There’s No Point"
Yes, many invisible illnesses have no known cure. But that doesn’t mean diagnosis is pointless.
Knowing your condition opens the door to:
Symptom-specific interventions
Lifestyle and allied health support
Safer prescribing practices
Proper monitoring and education
Still, if you’re not ready to engage in long diagnostic testing or aren’t well enough to travel, you can begin symptom management without a label.
🧍♀️ Common Fears Around Diagnosis (And Reframes)
“I don’t want this to define me.”
Understandable—and valid. But a diagnosis is just information. It doesn’t change who you are; it simply gives you a lens to better understand yourself.
You are still you—with or without the label.
“Will this impact work or future plans?”
It’s true that some people worry about stigma or discrimination. But many also find that a diagnosis protects their rights at work and provides legal standing to request modifications.
You do not have to disclose your diagnosis unless you want to—but having it on paper gives you the choice.
🔁 A Balanced Approach: Managing While You Seek Answers
You can begin:
Pacing and energy conservation
Gentle nervous system regulation (like breathing, grounding, or vagus nerve work)
Movement that suits your capacity
Nutrition and hydration support
Building a care team (e.g., EPs, psychologists, OTs)
All of this is valid and helpful—even while you're still chasing a diagnosis.
Final Thoughts
You don’t need to prove yourself to anyone.
Whether you’re pushing through appointments or hitting pause, your experience is real—and you deserve care that reflects that.
If you’re in the thick of it, remember:
You can step back without giving up.
You can start healing without having all the answers.
You can live well and keep seeking clarity.
Getting a diagnosis is often a journey, not a single step. But you're allowed to pace yourself along the way.
