Mental Health Support Services
Patients who suffer from a rare disease often experience higher levels of anxiety, stress, and depression. Mental health is often a key issue facing rare disease patients and carers. Many of the drivers of poor mental health reflect issues that are specific to managing a condition that is rare.
Living with a rare disease means much more than just managing symptoms; diagnoses can sometimes take years, and treatments can be hard to access. Patients often need to explain their disease to others who have never heard of it, not to mention the social isolation that patients may experience. As a result, patients often need help coping with the emotional burden created by their condition.
The good news is there are several identified measures available to patients, in coordination with their healthcare practitioners, to help them navigate life with a rare disease.
Online Support Groups
A supportive community can help people cope with living with a rare disease and support them to rally together for a greater quality of life. Connecting with people who understand what you’ve been through and how you’re feeling can be life-changing.
Resiliance & Mental Wellbeing
During the 2022 ITP Australia Virtual Patient Conference, we were joined by Louise Healy, the Education and Advocacy Manager (QLD) for Rare Voices Australia.
Louise’s presentation talks about research undertaken across rare diseases looking specifically at mental health and provides useful information, tools and strategies for people living with a rare condition.
Mindspot.org.au has course available online, for free, for those living with a Chronic Disease. You can read more about this service here.