Grieving my old self and accepting change in life with Huntington’s

One of the most challenging aspects of living with Huntington’s disease (HD) is coming to terms with the progressive nature of the condition and the inevitable changes it brings.

For those of us who are symptomatic, that involves not only adapting to physical and cognitive changes, but also grieving the loss of who we once were. That doesn’t occur at a single moment in time; it’s an ongoing journey of grief, frustration, and, eventually, acceptance.

In this piece, I’ll share my own experience of navigating this emotional roller coaster, the obstacles I’ve faced, and the ways I’ve learned to adapt while allowing myself to feel the weight of these changes.

The first signs of change

Before my diagnosis, I felt invincible. My life was full of energy, ambition, and goals that felt within reach. But when the first signs of HD appeared, I was overwhelmed by a sense of disorientation. Simple tasks, such as remembering details or maintaining my balance, suddenly became difficult. It felt as though I were losing control over my body and mind, which had always been reliable.

As I struggled to perform everyday tasks, I realized that life as I knew it was changing. That marked the beginning of my grief journey.

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Grieving my past self

Grieving the loss of my pre-HD self has been a long and winding road. I’ve had to make peace with the reality that, while I may have days when I feel more like my old self, I’ll never fully return to that person. This realization was heartbreaking. I used to think of grief as something experienced only when a loved one dies, but HD has shown me that grief can also stem from the loss of abilities, identity, and independence.

The sense of loss goes beyond physical changes. It affects the way I see myself and the way others interact with me. There was a time when I thought I could power through, that maybe the diagnosis was wrong, or that I wouldn’t progress as quickly as others.

Frustration, anger, and even resentment consumed me at times. I felt like I was fighting against a future I couldn’t control. But over time, I began to understand that staying in that space wasn’t sustainable. It was draining, both mentally and physically, and it affected my relationships with others. I realized that the battle wasn’t about fighting HD, but about learning how to live with it.

Eventually, I had to surrender to the reality of the disease. In doing so, I wasn’t giving up; I was accepting that my body and abilities were changing, and that was OK. Once I stopped resisting, I began to focus on what I could still do and how I could adapt. While this shift in perspective didn’t happen overnight, it was liberating when it did.

Adapting to a new normal

Adapting to the changes brought on by HD has required both physical and mental adjustments. Here are some techniques that have helped me manage the transition.

1. Pacing myself: I’ve learned to listen to my body more carefully. Rather than pushing myself to exhaustion, I now break tasks into smaller, manageable pieces and take frequent breaks. That helps conserve energy and reduce frustration.
2. Setting realistic goals: Instead of focusing on what I used to be able to do, I now set realistic, achievable goals based on my current abilities. This mindset shift has been essential in maintaining a sense of accomplishment and self-worth.
3. Seeking support: Surrounding myself with a strong support system, whether through therapy, support groups, or talking to family and friends, has been crucial. Having people who understand the emotional toll of HD reminds me that I don’t have to carry this burden alone.
4. Using adaptive tools: These resources, such as planners for memory, balance aids, and speech-to-text software, have been game changers. They allow me to maintain my independence while adjusting to my new limitations.
5. Practicing mindfulness: This practice, with meditation, has helped me stay grounded, especially when I’m frustrated. Focusing on the present rather than dwelling on the past or worrying about the future has allowed me to find peace.

For anyone going through a similar experience, my advice is this: Give yourself permission to grieve. It’s OK to mourn the loss of your old self. But also give yourself the space to adapt, to find joy in new ways, and to embrace the changes as best as you can. The journey is difficult, but with patience, support, and self-compassion, it’s possible to find peace and purpose despite the challenges.

Note: Huntington’s Disease News 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 other 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 Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.