Chronic Illness Literacy
Breaking Down Medical Language
Translating doctor-speak into plain language you can actually understand
Getting a diagnosis can feel like your doctor is speaking a foreign language. Medical terms are designed for precision, not clarity—which means they're often confusing when you're trying to understand what's happening in your own body.
Let's break down how to translate doctor-speak into plain language you can actually use.
Why Medical Language Is Confusing
Medical terminology often:
- Uses Latin or Greek roots
- Combines multiple descriptive parts
- Prioritizes precision over accessibility
- Assumes you know anatomy and physiology
Example: "Bilateral carpal tunnel syndrome with paresthesia"
Sounds scary. Actually means: "Numbness and tingling in both wrists from compressed nerves"
How to Break Down a Diagnosis
Most medical terms follow patterns. Once you know the patterns, you can decode them.
Common Prefixes
These tell you location or quantity:
- a- or an- = without (anemia = without enough blood)
- bi- = two (bilateral = both sides)
- hyper- = too much (hypertension = high blood pressure)
- hypo- = too little (hypothyroid = low thyroid function)
- poly- = many (polycystic = many cysts)
- pre- or post- = before or after
- sub- = under or below
Common Suffixes
These tell you what's happening:
- -itis = inflammation (arthritis = joint inflammation)
- -oma = tumor or growth (often benign)
- -osis = condition or disease
- -pathy = disease (neuropathy = nerve disease)
- -algia = pain (myalgia = muscle pain)
- -ectomy = surgical removal
- -oscopy = looking inside (endoscopy = looking inside with a scope)
Root Words
These tell you the body part:
- cardio- = heart
- neuro- = nerves/brain
- gastro- = stomach
- hepato- = liver
- nephro- = kidney
- derm- or dermato- = skin
- osteo- = bone
- pulmo- = lung
Putting It Together
Osteoarthritis
- osteo = bone
- arthr = joint
- itis = inflammation
- Translation: Joint inflammation affecting the bone
Hypothyroidism
- hypo = too little
- thyroid = thyroid gland
- ism = condition
- Translation: Condition where your thyroid isn't making enough hormone
Questions to Ask Your Doctor
When you receive a diagnosis, ask:
About the Condition
- "Can you explain that in plain language?"
- "How do you spell that? I want to look it up."
- "What's actually happening in my body?"
- "Is this acute (short-term) or chronic (long-term)?"
- "What caused this, if we know?"
About What to Expect
- "What symptoms should I watch for?"
- "Will this get better, worse, or stay the same?"
- "What's the typical timeline?"
- "Are there stages or phases I should know about?"
About Treatment
- "What are my treatment options?"
- "What happens if I don't treat this?"
- "What are the side effects of treatment?"
- "How will we know if treatment is working?"
About Daily Life
- "What should I do differently?"
- "What should I avoid?"
- "Can I exercise? Work? Travel?"
- "Who else should I see? (specialists, therapists, etc.)"
Reading Your Medical Records
You have the right to your medical records. Here's how to understand them:
Lab Results
Normal ranges are listed next to your results. If your result is outside the range, it will usually be flagged.
- H = High
- L = Low
- Critical = needs immediate attention
Don't panic if something is slightly high or low. Ask your doctor what it means in context.
Imaging Reports
These use standardized language:
- Unremarkable = Normal (good news!)
- Findings consistent with = This is what we see
- Cannot rule out = We can't confirm, might need more tests
- Impression = The summary/conclusion
Doctor's Notes
Look for these sections:
- Chief Complaint = Why you came in
- History = Background and symptoms
- Assessment = What the doctor thinks is happening
- Plan = What to do next
Using Online Resources
Good sources:
- MedlinePlus (medlineplus.gov)
- Mayo Clinic (mayoclinic.org)
- National Institutes of Health
- Reputable medical organizations for specific conditions
Red flags:
- Sites selling products or treatments
- Personal blogs without medical expertise
- Information that contradicts your doctor without peer-reviewed evidence
- Claims of "miracle cures"
Making Sense of Complex Diagnoses
Some conditions have long, scary names. Break them down:
Example: Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL)
- Cerebral = brain
- Autosomal Dominant = genetic, inherited from one parent
- Arteriopathy = disease of arteries
- Subcortical Infarcts = small strokes in inner brain
- Leukoencephalopathy = white matter changes
Translation: An inherited condition affecting small blood vessels in the brain, causing small strokes and white matter changes.
Bringing Someone With You
For complex diagnoses, bring a support person to appointments:
- They can take notes while you listen
- They'll remember things you might forget
- They can ask questions you don't think of
- They provide emotional support
You're Allowed to Not Understand
If your doctor uses terms you don't understand, it's their job to explain, not your job to already know.
Say:
- "I don't understand what that means."
- "Can you explain it differently?"
- "Can you draw a picture?"
- "Can you write that down for me?"
A good doctor will appreciate your questions.
Creating Your Own Reference
Keep a simple document with:
- Your diagnosis (plain language)
- What it means
- Key terms and their definitions
- Your medications and what they're for
- Questions you have
Update it after each appointment.
This Is a Process
Understanding a diagnosis takes time. You don't have to get it all at once.
Be patient with yourself as you learn this new language. You're navigating a complex system that wasn't designed to be patient-friendly.
But you're doing it. And that matters.
This resource is for educational purposes. Always discuss your diagnosis and treatment with your healthcare provider.
Related tools
These resources might help too. Pick what feels right for where you are.
Important Questions to Ask Your Doctor
A practical list of questions to help you advocate for yourself in appointments
Talking to Family About Your Condition
How to share your diagnosis, set boundaries, and handle difficult reactions
What is CADASIL?
A clear, human overview of CADASIL, how it shows up in families, and where to get help
This is one piece of the puzzle.
At some point, you can swap this box for a real illustration or photo that matches this resource. For now, it's a quiet reminder that you don't have to figure everything out from one page or one night.
Where to go from here
You don't have to turn this into a big project. Pick one small next step that feels doable, and let that be enough for today.
