Symposium speaker shares techniques on handling the grief associated with chronic illness and the loss of loved ones from chronic illness. By Lois Hall, M.S., guest writer
For a community whose history was marked by surviving the “bad blood crisis”—or worse, by not surviving—new and evolving treatments mean a shift from surviving to thriving. But there are still feelings surrounding this shift and still a struggle some patients and caregivers experience. At Hemophilia Federation of America’s 2024 Symposium, epidemiologist and public health specialist, Lois Hall, M.S., shared her knowledge of this struggle in a session called From Survival and Thrival.
I had the honor to speak at the 2024 Symposium in Indianapolis, thanks to an HFA staff member who heard about the benefits of going through the Grief Recovery Method program—how it really lifts you up, gives you hope and helps you move from grief to survival and even on to THRIVAL. It was great to meet with so many of you there!
I am a Grief Recovery Method Specialist (GRMS) working with the Grief Recovery Institute, an international organization that provides education, support and training on grief, the method and our associated programs. I do not have a bleeding disorder, but I am an epidemiologist and public health person. My knowledge of hemophilia began in the 1980s when I was the first epidemiologist to study AIDS patients for the State of Ohio. One of the most exciting things I learned at the Symposium is how much has changed, and how many new treatments there are.
Being diagnosed with a bleeding disorder means you make a ton of changes in your day-to-day lives, similar to other people with chronic conditions. Then pile on other life experiences like COVID, the death of a friend or loved one, job loss, divorce, an empty nest, moving, and even happy things like graduating, getting married, having a baby or retiring. And things you hear in the community or news – accidents, fires, demonstrations, conflicts and wars, tornadoes and droughts. The changes life throws at us get downright tough to maneuver!
In GRM, we define grief as the “normal and natural response to change or loss of any kind.” The thing that all of those items above have in common is CHANGE. All of those changes wear us down, make us exhausted and weary.
HFA asked me to “be positive” to “lift people up,” “give them some tips and resources for not only surviving but THRIVING, so it makes sense to have a GRM specialist like me speak at the conference.
Understanding What it Means to Thrive
Is THRIVAL even a “thing?” YES. Thrival emphasizes not just surviving challenges but thriving and flourishing in the midst of them. It denotes a state of not only enduring difficulties but also growing, evolving and prospering as a result.
Is thriving possible with a bleeding disorder? I’m here to tell you yes! We just need someone to show us how! GRM teaches us some tips for learning and living into THRIVAL:
Tell your truth. Avoid saying “I’m fine,” when you’re not. Your heart needs and wants to tell its truth. You don’t need to tell the details, but just find a way to honor your truth. You might say instead,“You know,
it’s a kind of tough time for me right now, but thanks for asking.”
Avoid telling yourself or others things that aren’t emotionally helpful. Saying “don’t feel bad, it could be worse” does not help people not feel bad about whatever is going on. What works is listening to them without analyzing, judging, criticizing or trying to fix it all.
Watch out for behaviors that will numb or mask your true feelings. Avoid reaching for food, alcohol or drugs when you’re sad, angry, anxious or upset. The truth is, these and other behaviors make us feel better but only short term. In the GRM we call these STERBs: Short Term Energy Relieving Behaviors. They work short term but can be more harmful in the end. Look for healthier ways to address your feelings, like talking through them.
There’s so much more to share but start here. Moving from survival to THRIVAL— YOU CAN DO THIS!
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