Invisible Illness Education & Support

Being diagnosed with an invisible chronic illness often means having to learn a whole new language.

There are medical terms to understand, symptoms that do not always seem connected, appointments with different health professionals, and a great deal of information to sort through. It can also be difficult to explain what is happening to family, friends, schools or workplaces when much of the illness cannot be seen.

The Woven Way offers individual education sessions designed to help people understand their condition, make sense of the information they have been given, and find language for communicating their experiences and needs.

A small number of sessions are currently available online to help clients and their families understand Postural Orthostatic Tachycardia Syndrome (POTS).

POTS Education Sessions

POTS is usually described in terms of an excessive increase in heart rate on standing, but its effects can extend well beyond heart rate. People may experience dizziness, fatigue, brain fog, exercise intolerance, gastrointestinal symptoms, temperature regulation difficulties, headaches, sleep disturbance and many other symptoms.

An individual POTS education session gives you time to talk through what POTS is, how it can affect the body, and what that might mean in everyday life.

Depending on what you already know and what you would like help understanding, we might discuss:

• what happens in the body when we stand

• the autonomic nervous system

• what POTS is and how it is diagnosed

• what current research says about POTS

• why POTS can cause symptoms throughout the body

• fatigue and brain fog

• why showers, meals, standing and some forms of activity can be difficult

• common approaches used to support people living with POTS

• pacing and working within the body's capacity

• making sense of information provided by health professionals

• reliable sources of further information

• questions you may want to take back to your treating health professionals.

We can talk through things that might help you make sense of your own experience, like:

• Why can I do this one day and not another?

• Why am I exhausted when I haven't done very much?

• Why can standing still be harder than walking?

• Why do I feel like my brain stops working when I'm upright?

• How do I explain POTS to someone else?

The aim of these sessions is to give you information that helps you better understand your body and communicate what you are experiencing.

Who are these sessions for?

Sessions may be useful for:

• people who have recently been diagnosed with POTS

• people who have had POTS for some time but still don't feel they understand it

• adolescents and young adults beginning to understand and manage their own condition

• parents or carers wanting to better understand a young person's POTS

• partners or family members wanting to understand what someone they care about is experiencing.

You are encouraged to attend together. For example, an adolescent and parent or a person with POTS and their partner may choose to have the session together.

About me

I'm Alice Greenwood, a speech pathologist, educator and researcher with a particular interest in invisible chronic illness and the way health information is understood and communicated.

My research explores how language shapes the experience and recognition of invisible chronic illness, particularly POTS, hypermobile Ehlers-Danlos syndrome (hEDS) and mast cell activation syndrome (MCAS).

My background in speech pathology and education strongly influences the way I approach these sessions. Complex information should not require a medical degree to understand. I enjoy taking complicated physiology and terminology, working through it with people, and helping them develop a clearer picture of what is happening and the language to talk about it.

Health education, not medical appointments

These are individual health education sessions, rather than medical appointments.

I can help you understand health information, explain concepts, explore how different aspects of POTS may fit together, find and understand reputable sources of information, and help you formulate questions for your healthcare team.

I do not diagnose POTS, recommend changes to medication, provide medical treatment or replace care from your GP, cardiologist or other treating health professionals.

Where something needs individual medical assessment or advice, I will encourage you to discuss it with the appropriate member of your healthcare team.

Booking a session

POTS Education Sessions are individual 60-minute online sessions.

60 minutes | $150

Before your appointment, you'll be asked to complete a short form about what you would most like to understand or discuss. This helps me tailor the session to your questions and current understanding.

Following the session, I'll send you a written summary of the key information we discussed, along with relevant resources where appropriate.

Sessions are generally designed as one-off education appointments, although you are welcome to book another session if you have more you would like to explore or would benefit from working through information more gradually.

Book here

If you have a question about whether a POTS Education Session would be suitable for you, please email alice@thewovenway.com.au or use the contact formbelow.