Twitter is a Community for People with Treatment-Resistant Depression

Amelia Talbot is a DPhil student in the Medical Sociology and Health Experiences Research Group researching treatment-resistant depression. Amelia’s DPhil is funded by Green Templeton’s Rosamund Snow Scholarship.

Here, Amelia discusses her latest research on social media and treatment resistant depression:

‘Social media’ is defined as a group of websites and applications where people can communicate with others by sharing of interests and hobbies. There are many social media websites including Facebook and Instagram , but Twitter is by far the most popular with 19 million users. Twitter is a microblogging service allowing users to send 280-character messages known as ‘Tweets’.

Twitter can give people with mental health conditions a way to document symptoms, safely express themselves, and find other people with similar conditions. These Tweets are valuable for researchers, since users often Tweet in the moment experiences that they might remember in interviews. Tweets are also useful in health training and continuing professional development.

Studies of Twitter have focused on how people experience depression as a broader condition. This excludes the sub-condition treatment-resistant depression, where antidepressants do not work (also called complex, recurrent, difficult to treat depression). Approximately 55% of UK patients with depression have treatment-resistant depression. The results of my previous study show that there are few studies on this condition. This suggests a potential clinical knowledge gap. To address this, I collected and analysed Tweets about treatment-resistant depression. I conducted a conventional content analysis of these Tweets and then used an interpretive method to determine why Twitter may be important to people with treatment-resistant depression.

I collected 415 Tweets and developed five ‘clusters’ to describe them. These included: (i) self-diagnosis; (ii) symptoms; (iii) support; (iv) mental health wins; and (v) condition expert. I summarise each cluster below.

Self-Diagnosis

Twenty-six users self-diagnosed themselves with treatment-resistant depression. Some of these users learned about treatment-resistant depression through Twitter interactions. People’s reactions to the potential diagnosis varied. Two users described the thought as frightening. Four users said they were relieved to learn about treatment-resistant depression because they had thought they were not trying hard enough to manage their symptoms.

Symptoms

One hundred and forty eight users discussed the symptoms of treatment-resistant depression. They included fatigue, hopelessness, and exhaustion. A few users discussed their experiences with self-harm and suicide ideation, describing themselves as ‘suicide survivors.’ Some users expressed a wish that people without treatment-resistant depression understood their symptoms.

Support

Eighty-one users Tweeted support messages. This included sharing strategies for managing treatment resistance (e.g., not giving up on finding a way to manage the condition). Direct messages served as another channel of support.

Mental Health Wins

Sixty-two users Tweeted ‘mental health wins.’ These included Tweets about achievements that are difficult when experiencing treatment-resistant depression (e.g., getting up, going outside). Some users seemed to be proud of their progress with depression. It took them a long time to become manage their depression. Management strategies included medications, counselling, exercise, and mindfulness.

Condition Expert

Forty users considered themselves experts on treatment-resistant depression. Their experiences they said provided them with knowledge about diagnosing and treating their condition. One of these decisions involved stopping taking medication and trying other therapies like mindfulness.

Community

The above Tweets I interpreted as showing how Twitter can be a community for people with treatment-resistant depression. Users could connect with others with treatment-resistant depression, ask and receive advice, and share experiences with health professionals. Some described Twitter as a place where they felt comfortable sharing their experiences.

Implications

People with treatment-resistant depression may want to start a Twitter account if they think it will help them connect with others and reduce feelings of isolation. Health professionals may also want to use Twitter to understand people’s experiences of depression. Confidentiality must remain a priority.

Acknowledgements

Thank you to my supervisors and the public contributors.