A recently published study* has set out to describe how people with migraine use social media and how social media use affects their identity and sense of self.
Migraine symptoms are typically episodic and unpredictable, making it a difficult condition to manage in daily life. It is distinctive from other chronic conditions as it lacks a visible illness marker. This can cause frustration for the person with migraine when the condition is not understood (or believed) and may result in altered self-concept or self-esteem. As a consequence, people with migraine may not receive adequate support owing to the experience of illness and pain being subjective.
Social Media Use
The study recruited 20 patients in total. Participants’ use of social media tended to fit on a spectrum from actively engaging with social media to more observational social media users, and some people in between.
Facebook was the most commonly used social media platform among participants. Many sought information and social support from closed migraine-specific Facebook groups. Blogs were used by 2 participants. A total of 3 participants used YouTube to observe migraine symptoms and learn about migraine causes or pain reduction. One participant created YouTube videos to educate others about migraine. Twitter was often viewed as a more professional domain rather than personal.
Seeking and Sharing Information
The study findings suggest that people with migraine are using social media to obtain health-related information to better understand their condition and treatment options.
In total, 11 said they gained expertise in migraine knowledge and 13 gained awareness of new treatments. For some, interacting with others in Facebook groups resulted in a change of self-management for migraines.
In total, 14 participants said they shared information with other users on social media, mostly on Facebook. Some shared information with others who experience migraines in migraine-specific groups.
Others used social media to share information with people who do not experience migraine by posting on their personal Facebook walls, seeking to help others to understand their condition.
16 participants spoke about the benefit of pooling knowledge on social media. The dialogue and collaboration with other users added another level of benefit to information seeking and sharing.
A total of 12 participants said information gathered on social media had increased their confidence, knowledge, and skills in managing their own health care. Others benefited from reading the online discussion and not taking part themselves.
A total of 10 participants spoke about the need to experience migraine to truly understand it. Being able to read the lived experiences of other people with migraine was beneficial in providing personally relevant information
Social media can offer instant access to continuous migraine-related information, as well as social support from empathic others. The opportunity to pool the subjective lived experience of migraines on social media was described as invaluable, and the exchange of support and information was viewed as mutually beneficial
A total of 10 participants described not feeling alone and that social media had helped them to feel less isolated. For some, social media provided a source of support for an unpredictable and invisible illness. They spoke of the invisible and episodic nature of the condition that may contribute to societal misunderstanding about the impact and severity of migraine.
A total of 14 participants referred to migraine being an invisible illness, with 10 participants saying they had been given patronizing or unhelpful advice offline by others who often saw migraine as just a headache. In total, 18 participants discussed how the use of social media can help validate the migraine experience and combat the lack of understanding about the unpredictable and invisible nature of migraine.
I think the worst thing for people is not getting support…I think social media can be a good way of calling that out when we see it and people going: “Yes, that happened to me. That’s not okay.” There’s quite a lot of validating involved.
For 19 participants, the process of being able to hear about others’ experiences and compare them with their own provided a sense of comfort. In the cases where people were unsure of what they were experiencing, reading similar accounts from others provided validation and reminded them that they were not alone.
After accessing content on social media, some participants benefited from reassurance regarding unusual symptoms.
In this sense, the use of social media served to normalize what some felt might be abnormal. In total, 6 participants also described social media as a lifeline:
I don’t know how people survived beforehand actually, especially because it’s [migraine] invisible.
A total of 10 participants referred to social media being available all the time, providing a continual source of contact with other users not limited to geographic location.
A total of 10 participants described how they used social media as an outlet for discussing frustrating migraine experiences. Social media was a resource for some participants to cope with the emotions that built up from their experiences. 8 participants described how venting to other people on social media can prevent over-burdening family and friends.
Social media can help validate the experience of migraine and in turn help people who experience migraines to feel better understood and less alone. How migraine is part of a person’s identity and represented online varies. Further understanding about the needs of people with long-term chronic conditions may help in the development of future Web-based interventions to improve health and well-being.