Hidden Grief and the Power of Awareness
We normally associate grief with losing someone, but what about when we lose our bodily functions little by little? What about when we lose parts of ourselves in the process?
I've been dealing with grief almost my whole life, but I had no clue about it. One of the main aspects of Friedreich’s Ataxia (FA) is that it gradually worsens: speech, walking, fatigue, hand strength, breathing, literally everything. With that comes grief, and as a little girl, I had no idea what I was experiencing. I missed activities like physically writing, doing hairstyles, standing for pictures, talking without getting out of breath, playing soccer, swimming and so much more. Even things as simple as getting ready looks so so different now. It's frustrating, heartbreaking, and yes, I’ll probably continue to lose more but that’s FA & grief.
When I was little, I somewhat knew about the physical changes FA caused. It's a very complicated diagnosis, so there was no way I could have understood all of them then. Some physical symptoms are still new to me even now.
What I definitely wasn't prepared for was how it would affect me mentally.
Anyone who knew me growing up knows that I was an angry and blunt kid who was literally pissed at everyone around me. Sometimes it felt like my head was going to explode, and I became very good at hiding it too. Little me just thought she was going stir crazy with no idea why. But a complicated diagnosis brings all kinds of emotions with it, and those emotions need to be acknowledged and processed, especially grief.
When grief is unnamed, it feels chaotic. But when grief is named, it becomes something we can actually work with. Becoming aware of our grief changes everything. It doesn't make the pain disappear, but it transforms the way we carry it.
Grief occurs wherever there is loss. Since life is full of gains and losses, no matter how small or large, grief is everywhere.
• Awareness turns confusion into clarity.
• Awareness gives the chaos meaning.
• Awareness reduces self-blame.
• Awareness allows healing to begin.
• Awareness helps us know what we actually need.
• Awareness deepens emotional maturity.
• Awareness gives grief a place to go, transforming internal pressure into emotional release through writing, crying, meditation, art, or movement like yoga or the gym.
When we're unaware of grief, it controls us. But when we’re aware, we can roll with it instead of being dragged by it. A complicated diagnosis changes us physically, but it also changes us as a person too. Now, whether that change is a good or bad one is a choice we all have to make for ourselves. ✨
Stay Connected & See ya in the next!