Focusing on Mental Health at This Year’s Hemophilia Federation Symposium

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by Joe MacDonald |

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Fresh off the heels of the National Hemophilia Foundation’s virtual symposium earlier this month, I just attended another online conference hosted by the Hemophilia Federation of America.

One thing that drew me to this event was the number of sessions dealing with mental health, for both caregivers and people living with bleeding disorders. In all of my years attending annual hemophilia conferences, I have never seen so much attention given to mental health issues. The National Hemophilia Foundation also addressed the problem during its conference, but the Hemophilia Federation of America featured mental health as one of the main topics facing the community.

The conference featured short videos emphasizing self-care and wholeness of mind and body. Offered by Lauren Black, a licensed social worker, the videos covered mental health options during this time of crisis. Suggestions to help deal with difficult topics included getting in touch with your counselor to determine if video conferencing is available. While face-to-face interaction is the best way to meet with a counselor, video and phone calls certainly can help you manage mental health, too.

Black also provided suggestions about finding a therapist. Strategies include starting with your insurance company and asking for in-network counselors, visiting Psychology Today‘s website to find resources in your area, and researching online therapy companies. Black emphasized that it’s important to meet with a licensed therapist.

In another session called “Let’s Talk Mental Health in Times of Crisis,” Gary R. McClain, PhD, offered ways to manage stress for caregivers and loved ones with chronic illness. McClain covered four main topics: the fight or flight response, resilience, tools when experiencing fight or flight, and tools to strengthen coping muscles.

I appreciated his reminder for us to follow a process by first taking a step back, then turning off our self-critical voices. We should dial it down, reframe, and review our foundations. We can then work it out, take a break, and vent. Each of these steps reminds me to implement a process to curb my anxiety when it surfaces.

McClain suggested a website titled Just Got Diagnosed for those new to the community. This site is a helpful tool when addressing a loved one’s medical needs and the personal needs that caregivers experience early in the journey. As I mentioned in last week’s column, newly diagnosed folks struggle with a unique set of issues.

Another notable topic McClain addressed was survivor’s guilt. I don’t recall this subject being discussed previously at a national symposium.

The topic of caring for mental health has remained in the shadows for a long time. By bringing our struggles into the light, we become more secure, because we realize that we are not alone. Many of us know the lasting effects of anxiety and depression. I am grateful these topics found their way onto a national platform.

Providing opportunities to learn ways to transform and encourage our community brings awareness to the issues that face us during times of stress. Knowing that our journey is not undertaken alone, helps us to move forward with one another.

If you or someone you know feels depressed or has thoughts of suicide, please text the Crisis Text Line by texting “HOME” to 741741, or call the National Suicide Prevention Lifeline at 1-800-273-8255. 


Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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