Advocating for yourself and others is the key to creating understanding toward those with migraine and headache diseases.
Migraine and headache diseases such as cluster headache attacks are often called ‘invisible diseases’ because of their not-so-obvious symptoms. Advocacy is key to getting care and being understood, including in the workplace. For employees living with migraine or other headache diseases, support can make a world of difference in their performance and productivity.
We spoke with Dr. Harald Müller, a longtime advocate for patient access and care, who also lives with cluster headache—an extremely painful headache disorder that is often considered the most painful of all headaches. Dr. Müller shared his experiences advocating for cluster headache understanding and why he believes advocacy and community are vital to educating others.
The Impact of Cluster Headache
Dr. Müller experienced debilitating, severe pain for six years before he was properly diagnosed with cluster headache. The effects of misdiagnoses and ineffective medications gave him no relief from the ruthless symptoms of cluster headache.
“I was afflicted by very severe unilateral headache attacks, predominantly in the night, which turned my nights into a nightmare,” says Dr. Müller. “I could hardly sleep. It was hard for me to concentrate and thus had problems in my job.”
Cluster headache caused Dr. Müller to lose his job and any future prospects of a board position at his company. Eventually, he switched to desk work where he could still effectively contribute to the company. Unfortunately, many people with cluster headache do not have the same outcome. Dr. Müller shared a few stories of people he knew who were impacted by cluster headache:
- A man was forced to give up his dream of being a jet pilot when he was afflicted by cluster headache, despite the fact that he was qualified, talented, and had already passed the strenuous training.
- A firefighter who loved his job with “every fiber” had to quit when diagnosed with cluster headache.
- A navy soldier with a promising career and a family had to quit his job due to cluster headache. Eventually, he and his wife divorced as a result of cluster headache. Dr. Müller spoke to his ex-wife, who said, “He was so strong, and I always felt so safe with him. But now I see him crying from pain as if he was a little child.”
“I know so many patients whose marriages and families broke up. I know so many patients who never dared to have children due to their disease,” says Dr. Müller “Cluster headache has severe and dramatic impacts on the whole life of patients and their families.”
The Importance of Education
Because of the misconceptions surrounding migraine and headache diseases, many people do not understand how badly headache can impact people who live with them. This causes people living with migraine and headache diseases like cluster headache attacks to feel like they are the only ones going through their disease.
This sense of loneliness also causes many people to not seek the care they need. Employees living with migraine and headache diseases usually hesitate to share their conditions with their colleagues out of fear of not being believed. This forces employees to endure their pain alone, which interferes with productivity and performance.
“It must be ensured that accurate and simple information is made available to the patients and their spouses, partners, and families!,” says Dr. Müller. This also includes coworkers and employers.
How can employers advocate for their employees?
Migraine and cluster headache are both examples of diseases that can severely disrupt an employee’s performance and the overall productivity of the organization they work for. That’s why it is in the employers’ best interest to eliminate stigma and advocate for employees living with migraine and headache diseases.
According to a study conducted by Dr. Müller and Dr. Paolo Rossi, MD, PhD, the former Chief of the Headache Clinic at INI Grottaferrata in Rome and Head of Clinical Neurology at the Nursing School at Tor Vergata University, it was found that “60% of cluster headache patients feared losing their job” due to their disease.
“The vast majority of cluster headache patients have experienced stigma when seeking or receiving healthcare,” says Dr. Müller. “Almost half the patients have experienced discrimination in society for prejudice/negative attitudes.”
Some workplace accommodations that can help include flexible work schedules and work-from-home options. A flexible schedule can allow employees to take breaks whenever they experience migraine symptoms or attacks. If commuting or workplace environmental factors contribute to cluster headache and migraine triggers, then working from home can greatly benefit them.
Advocating for Yourself
Getting your story out will break the myths surrounding migraine and other headache diseases. When you share your story, you share the impact of the debilitating disease you live with. You are also sharing a story with those who have the same experiences. You’re letting them know they are not alone.
“There are so many creative ways for patients to advocate for themselves,” says Dr. Müller. A few creative ways to advocate include:
- Fostering or doing research
- Writing books or articles
- Participating in radio and TV interviews
- Advocating change by talking to politicians
- Talking to employers and coworkers
“The easiest and fastest way is to find a patient support group…and get as much information as possible,” explains Dr. Müller. “Nowadays, there are even many offers from support groups or organizations on the internet, but I would recommend patients to meet personally.”
Advocacy is the key to creating an inclusive and supportive environment for those living with migraine. Education, community, and advocating for yourself and others will break down myths. Remember, you are not alone.
“If a patient advocates for themselves, they cannot do anything wrong,” says Dr. Müller. “The only wrong thing that they might do is to do nothing.”