Here is a story about Migraine and Headache Australia and the challenges their patients face around stigma and the importance of building a community: Migraine and Headache Australia is the only charitable organisation in Australia that aims to support more than 5 million Australians affected by headache and migraine. Its mission is to provide reliable information, advocacy and support for the patient community.
That is easier said than done. Migraine is a highly stigmatised condition where people with migraine avoid saying the “M” word. Why is that? Migraine has historically been associated as a women’s disease that is inflicted upon those with a nervous disposition treated by male doctors. This is, of course, sexist and false. Research has even proven that there is not a migraine “personality” type as suggested previously in some medical literature.
The other challenge facing migraine is that it is a hidden disorder. People can’t see excruciating head pain. You can also be fine one day and completely debilitated the next. Like other chronic disease, there is no cure, triggers vary and ongoing management is required. Given the history and nature of the condition, people living with migraine have often become the target of suspicion, ridicule and isolation.
Migraine and Headache Australia represent patients who often don’t want to be identified with migraine. This presents a formidable challenge. Stigma influences the number of people who will see the doctor for their condition. It also affects their likelihood to open up about their condition, discuss with others or seek other forms of support. As a consequence, migraine in Australia is underdiagnosed, undertreated and poorly managed.
Despite these challenges, Migraine and Headache Australia has built a community over time for those who want to learn more about their condition and take control back over their lives.
A National Headache Register has been built with over 12,000 subscribers who regularly receive the latest information, research, news and events in the field. This register and collection of contact details is perhaps one of the most powerful and important assets that we have. It has enabled us to help rally over 1,900 submissions for a recent PBS submission for a new generation treatment.
The National Headache Register has also allowed us to create a database of over 100 migraine patient advocates who have volunteered to share their story publicly for media and advocacy opportunities throughout the year.
In many respects, the advocacy for migraine is decades behind other disease states. We have a long road ahead but we also have the advantage of learning from where others have failed. Migraine and Headache Australia are determined to improve the quality of life for those living with migraine today and for future generations to come.
If you are interested in sharing your story, please contact Petrina Keogh.