These are a few of my Favourite Things
Finding useful and trustworthy resources for understanding complex health conditions can feel like trying pull blood from a rock: really fkn hard.
Especially when your symptoms do not fit neatly into one box.
Maybe you have been told your bloods are “fine”, but you still feel awful. Maybe you are trying to understand why standing up makes your heart race, why pain keeps moving around, why fatigue does not behave like normal tiredness, or why your body seems to have a full-time job creating new admin for you.
And then you go online.
Suddenly you are trying to sort through academic jargon, wellness influencers, outdated medical advice, miracle cures, dismissive forums, symptom checklists, TikToks that are a bit too relatable, and Facebook comments from someone’s aunty who is very confident that celery juice fixes everything.
It is a lot.
So here are a few of my favourite places to start when you are looking for resources that are realistic, useful, and more grounded than “just drink more water and do yoga”.
Why good resources matter
Good health information should help you understand yourself better, not make you feel like you have failed at being a patient.
It should give you language for what you are experiencing. It should help you ask clearer questions. It should support advocacy without pushing you into panic. And ideally, it should acknowledge the messy reality of living in a body that does not always follow the textbook.
A helpful resource is not a replacement for individualised healthcare, but it can make healthcare conversations much easier. Sometimes having the right words is the difference between “I feel weird all the time” and “I am noticing symptoms that might suggest autonomic dysfunction, and I would like to discuss whether further assessment is appropriate.”
How to use these resources without spiralling
A good resource should help you feel more equipped, not more doomed.
When you’re reading, try asking:
Does this help me describe what I experience?
Does this give me better questions to ask?
Is this relevant to my country, healthcare system, age, diagnosis, access needs or support context?
Is this coming from a patient organisation, clinicians, researchers, lived experience, or someone selling me a cure?
Am I researching because this is useful, or am I doom-scrolling because my nervous system has decided we live here now?
No judgement if it is the last one. We have all been there.
But it helps to notice the difference.
Dysautonomia Support Network is a US-based patient-support organisation focused on helping people with dysautonomia become more informed, connected, and able to self-advocate. It’s a site designed by patients for patients, and includes resources for people who are newly diagnosed, looking for quality-of-life support, seeking community, or trying to find providers.
This is a helpful place to start if you have symptoms that seem to involve your “automatic” body systems: heart rate, blood pressure, temperature regulation, digestion, sweating, light-headedness, fatigue, or feeling wildly unwell after being upright.
Why I like it: it does not treat patient education as a cute little bonus. The resources are easy to access and understand, and help you put words to the experiences in your body.
This kind of resource can be especially useful when you’re preparing for an appointment and need to move from “I just feel weird all the time” to something more specific, like:
“I’m noticing symptoms that seem related to being upright, changes in heart rate, fatigue, and temperature regulation. Could we discuss whether autonomic dysfunction might be relevant?”
The Ehlers-Danlos Society has resources for people living with Ehlers-Danlos syndromes and hypermobility spectrum disorders, including support group listings, online communities, education, and information about EDS and HSD.
This is a good resource if you are trying to make sense of hypermobility-related symptoms that do not stay politely inside the “joint pain” box. For some people, hypermobility sits alongside pain, fatigue, gut symptoms, autonomic symptoms, headaches, pelvic health concerns, injury patterns, anxiety, sensory differences, or the constant feeling that your body is held together with vibes and sports tape.
Why I like it: it gives you a broader framework. A lot of hypermobile people have been told they are just “flexible”, “clumsy”, “unfit”, “dramatic”, or “too sensitive”. Good resources can help reframe those experiences as patterns worth understanding.
This can be useful for advocacy because it gives you language to ask better questions, such as:
“Could my history of hypermobility, repeated injuries, pain, fatigue, and autonomic-type symptoms be connected?”
Again, this is not about walking into an appointment with a 47-page Google diagnosis. It is about noticing patterns and asking for care that matches the whole person, not just one sore knee.
Emerge Australia is an Australian patient organisation providing services, evidence-based education, advocacy and research for ME/CFS and Long COVID. Healthdirect describes Emerge as the national patient organisation for ME/CFS and Long COVID, and notes that it provides education, advocacy, research, support services, learning modules, and information about areas such as managing ME/CFS, NDIS and DSP access.
This is particularly useful if you are dealing with energy-limiting illness, post-exertional malaise, post-viral symptoms, Long COVID, or the awful experience of your body responding to “normal” activity like you’ve attempted an extreme sport.
Why I like it: it is Australian, patient-centred, and advocacy-focused. That matters because healthcare systems, disability supports, workplace conversations, school supports, and funding pathways are not the same everywhere.
For people with ME/CFS or Long COVID, generic advice like “just gradually build up” can be unhelpful or actively harmful when it ignores post-exertional malaise. Having access to condition-specific information can help you explain what is actually happening, rather than being shoved into a standard fitness or motivation framework.
A useful appointment line might be:
“I’m not just deconditioned. I’m experiencing symptom worsening after activity, and I’d like support that accounts for post-exertional malaise.”
#MEAction has handouts and tools for people with ME, including downloadable resources, a hospital checklist and form, pacing and management guides, and materials that can be used to educate, guide and inform.
This is a great resource for people who need something practical they can actually bring into healthcare settings. Because sometimes the problem is not just finding information. It is getting that information into a format that another person can understand before your appointment time runs out.
Why I like it: it recognises the advocacy burden. When you have a complex, poorly understood, or commonly dismissed condition, you often end up doing a ridiculous amount of translation work. You are explaining your symptoms, your limits, your history, what has already been ruled out, what makes things worse, and what support you need, often while unwell.
Resources like hospital checklists, pacing guides, and clinician-facing handouts can reduce some of that load.
A practical way to use this kind of resource is to prepare a one-page summary before an appointment:
Diagnosis or suspected condition
Main symptoms
What worsens symptoms
What helps
Current medications and supports
What you need from this appointment
Any reasonable adjustments required
Healthcare should not require this level of admin. And yet having the right document at the right time can change the whole conversation.
Health Consumers’ Council WA is not condition-specific, and that is exactly why it is useful. It focuses on health consumer advocacy, healthcare rights, informed choices, and navigating health services. Its individual advocacy page describes advocacy as having someone on your side who understands the health system, and its self-advocacy resources include guidance for navigating care and preparing for appointments or hospital admission.
Their “speaking up” guidance is also very aligned with what many people need in real appointments: asking for plain language, checking what happens next, raising concerns when something does not feel right, and being actively involved in care without pretending the entire responsibility sits on the patient.
Why I like it: self-advocacy is often talked about like it means being pushy, difficult, or endlessly confident. It does not.
Self-advocacy can sound like:
“Can you explain that in plain language?”
“What are the risks and benefits?”
“What are my other options?”
“What should I do if this gets worse?”
“Can we write down the plan?”
“I’m not comfortable with that explanation yet.”
“I’d like to bring a support person.”
“I need this information in writing so I can process it later.”