Self-Stigma in TB: A New Approach

By Sarah Catherine Baker, Key Correspondent for the Irish Forum for Global Health

“What I love about it is that it’s dealing with the fundamental core of a person. My vision for all the work I do in this area is that you can just be the best version of yourself, as soon as you can get it. You don’t have to wait.”

That’s Nadine Ferris France, discussing her latest work in the field of self-stigma. Last week, at the Irish Forum for Global Health’s 2018 Global Health Exchange Conference, Ferris France presented on her newly developed toolkit that helps TB patients understand and combat self-stigma. I caught up with her after the conference to better understand the toolkit, its background, and how it might change people’s lives.

Ferris France developed the toolkit, which is still in its pilot phase, alongside a team of TB and self-stigma experts. It includes individual exercises and group activities that a facilitator delivers to groups of 15-20 people. Anyone with a TB diagnosis can participate. For Ferris France, the techniques used in the toolkit are what set it apart from other TB interventions. “I think it’s quite different, this approach in development,” she said. “In this methodology there is some self-reflection, some self-care, we have some meditation in there, we’re drawing on alternative ways to help the person. So it’s absolutely the person at the centre.”

Self-stigma is a critical issue for TB patients. Ian Hodgson, one of the toolkit’s creators, described self-stigma as internalizing society’s negative prejudices and allowing them to influence your actions. “I think it’s a problem because it stops people from helping themselves,” Hodgson said. “If you think the doctor is going to raise his or her eyebrows when you tell them what you have, you’re not going to want to go see them.”

Ferris France, who likened self-stigma to shame, also underlined how detrimental it can be to a person’s life. “It causes you to withdraw,” she said. “It causes you to feel less than other people, and then you start acting as a less-than, as a victim. And then of course what happens then is the world mirrors your actions.”

The toolkit gives TB patients a space to reflect on self-stigma and tools to challenge it. The focus on the individual is critical for Ferris France. After studying societal stigma around HIV/AIDS for twenty years, Ferris France had her own experience with stigma through a divorce. “After that I started to reflect, and I thought oh my god, we’ve totally missed it. We spent all those years trying to change what they think about me, and not changing what I think about me.” Shifting the focus from the societal to the individual level is key for her, and key for the toolkit. “If you support the individual person to be really strong, then they can navigate their family, their community, and their system from a strong base.”

Last September, Hodgson flew to Kazakhstan to help facilitate the toolkit’s first pilot administered to a group of people who had been cured of TB. Feedback from the sessions will be used to improve the toolkit before it is made publicly available. Hodgson described a number of surprises that cropped up. “There were parts of it we thought would be difficult to run that actually went incredibly smoothly, and parts that we thought be easy were surprisingly difficult,” he said.  “They enjoyed the self-reflection, and being able to think about their own experiences. It seemed a lot of them hadn’t had time to do that before.”

Self-reflection is also a key point for Ferris France. “People don’t often reflect deeply on these things. These big things happen, HIV or TB, and maybe they’re struggling with other things, and people don’t even create a space to feel compassion for themselves,” she said. “This toolkit provides people an opportunity to actually self-reflect, to look inside themselves to see how they’re affected, and to do something about it.”

The toolkit not only gives TB patients space to reflect on self-stigma, but empowers them overcome it. According to Ferris France the key lesson is learning to question your own beliefs about yourself. “If I don’t think I’m dirty, then when I meet you, I’m not going to think you think I’m dirty,” she explained. “If there’s no victim there can’t be a bully. The bully just falls away.”

For Ferris France, the toolkit is fundamentally an opportunity for TB patients to feel compassion for themselves, to connect to themselves, and to be comfortable with who they are. “Because that’s what we all want, right?” she summarized. “To stand in our own authenticity, in our own self. To be strong. This toolkit and this approach is what allows people to do that.”

16th November 2018