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The Hemophilia Federation of America鈥檚 Learning Central now offers a Mental Health and Wellbeing courses, which provides a library of information and resources that you can explore at your own pace and revisit at any time. Specific topic areas include anxiety, suicide, trauma, pain, depression, grief and more.

HFA staff had its first conversation about doing courses on mental health in 2017 after noticing issues with depression and anxiety coming up more frequently among Blood Brothers, Blood Sisters and parents. Some who had survived the HIV crisis of the 1980s 鈥斅爓here it鈥檚 estimated that 90% of people with severe hemophilia contracted HIV through contaminated clotting factor 鈥 were now asking 鈥渨hy me?鈥 as challenges arose.

鈥淭here were also people fighting insurance companies and trying to do infusions 鈥 they were falling apart,鈥 said Lori Long, director of Institute/HFA鈥檚 Learning Central. 鈥淭here were stories of people having meltdowns at their HTC and stories of women trying to get diagnosed and not getting treatment.鈥

HFA and the community as a whole rarely used the term 鈥渕ental health鈥 before 鈥 using phrases such as 鈥渟tress management鈥 instead 鈥 but it was time to address mental health head on.

鈥淥ur community has been through collective trauma together,鈥 said Lauren Black, HFA associate director. 鈥淲hether it was the HIV crisis or just being diagnosed, they felt no one was really listening to them.鈥

For Long, a critical turning point in the discussion on mental health in the bleeding disorders community came at a Symposium. There had been some suicides of well-known community members who were passionate and seemed to have a strong perspective on life. If it could happen to them, what about everyone else?

鈥淏lood Brothers were talking and crying and saying, 鈥榳e need help with mental health and there needs to be a conversation,鈥欌 she said.

Demystify and Destigmatize

The new mental health courses can鈥檛 fix depression and anxiety, but they are meant to help people understand and recognize whether they have mental health issues and how to seek help.

HFA staff examined what people with chronic pain and chronic illness experience, basing the courses on the personal experiences and messages from the community. Long and other Learning Central staff engaged in personal phone calls, monitored social media chatter and spoke to community members at Symposium. Unlike some other learning resources, the topics and resources didn鈥檛 come from focus groups or surveys but are instead based on years of listening and observing.

The online courses include members of the bleeding disorders community who act as 鈥済uides,鈥 walking you through the materials through their videos, photos and quotes. 鈥淚 found it very cathartic to speak up,鈥 said Michael Bishop, Institute content design specialist, who served as a guide in the courses. 鈥淚 was eager to talk about it.鈥 (See Bishop鈥檚 article about mental health on page 26.)

It could also be reassuring for the guides to hear other community members share their experiences. 鈥淚n some ways it was good to hear those things coming from other people because you know you鈥檙e not the only one, but it was emotionally exhausting,鈥 Bishop said. 鈥淚 forget how much those things affect me. Ultimately, the feelings of universality was enough to get me through. I鈥檓 in this with the whole community.鈥

Course material was developed by tapping into the expertise of mental health professionals, some of whom are also community members. All content was reviewed and vetted by medical professionals to make sure information was not misidentified or misrepresented.

Black reminds those who are interested in Learning Central鈥檚 Mental Health and Wellbeing courses to take it at their own pace. With most Learning Central courses there is normally an implied learning path where lessons are taken in a particular order, but with the mental health courses, participants can choose from a menu and take what lessons resonate with them at the moment.

Course material can be sensitive, but it was developed with careful thought as not to trigger pain, while also showing it鈥檚 important to verbalize very specific things with the community. Every lesson throughout the courses has tips for coping and information on where participants can get help.

鈥淚t鈥檚 OK to go through the courses slowly and to come back,鈥 Black said. 鈥淵ou don鈥檛 have to finish all at once.鈥

Two community members mentioned in the course have since passed away. In the course, 鈥渨e were able to memorialize and honor some of those in the community who have passed,鈥 Long said.

Topics Linked to Mental Health

In addition to discussing specific mental health topics, the courses also touch on topics connected to mental health, such as pain management and forced lifestyle changes. Some people come to a realization that they can no longer do a certain type of job because it doesn鈥檛 give reliable insurance or because of physical issues, so that may lead to a conversation around mental health.

鈥淢ichael鈥檚 (Bishop) sound bite on pain management is powerful,鈥 Long said. The section also discusses the intricacies of managing pain during an opioid crisis and tips for coping with pain, including palliative care.

鈥淧alliative care is not just for people who are dying,鈥 Long said. 鈥淚t helps many people with comfort and endocrinology for ways to make opioids more effective.鈥

HFA staff plans for the courses to be a leaping off point for other possibilities. Community members could take the courses before attending a Zoom meeting on mental health, for example, so they have background knowledge. Possible additions to the courses might include a similar course focused on Latino culture using Spanish-speaking guides and stories; more in-depth coverage of other mental health issues such as bipolar disorder, eating disorders and Alzheimer鈥檚 disease and dementia; and a deeper section on grief and bereavement.


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