Declaration of Rights for People with Headache Diseases
We, the people with headache, migraine and cluster disease, deserve respect and empathy for the serious and sometimes debilitating medical conditions with which we live. We will not be disempowered, minimized or stigmatized by a society that does not understand the complexity and seriousness of our disease. We demand research, treatments and societal support that is proportional to the impact of our disease. This means an increase in funding for research, better insurance policies that make it easier for us to access our treatments and more visibility in the public space.
We are working to educate people on why the terms “patient” and “sufferer” can be problematic. Sufferers, implies defeat, and we are patients only when interacting with medical professionals who manage our diseases – we are people living with migraine, cluster or headache disease 24/7.
We will fight to have our struggle against these painful and disabling diseases honored. We, to the best of our ability, will make headache diseases visible.
Recommendations For All People
- Honor and believe the struggle of people living with headache, migraine and cluster disease to cope with their pain and many other symptoms.
- Educate and work to correct the culture that penalizes people with severe headache, migraine and cluster disease.
- Learn about these diseases and understand the systemic nature of them.
Recommendations For People With Headache Diseases
- When you can, reject the stigma of headache, migraine and cluster in yourself, and confront it in others. This takes work and time to understand the messages we have received about living with a chronic disease.
- When you can, be visible as a person with headache, migraine or cluster disease.
- When you can, participate in awareness and advocacy efforts. Seek out policy makers and advocate for understanding, research and treatment.
Rights Of People With Headache Diseases
- To live a life of dignity, despite whatever limitations may be caused by our disease.
- To not be blamed or dismissed for having a headache disease when all we want is effective treatment.
- To gain access to quality medical treatment and social service provision not limited by external forces, financial or otherwise.
- To advance robust scientific research that addresses the impact of headache disease and chronic pain on people living these diseases, their caregivers and families and society.