How I feel safe in my own body again while living with HD
When your body moves without permission, it can become difficult to trust it
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For a long time, my body didn’t feel like a safe place to live.
Huntington’s disease changed the way I moved, rested, thought, and experienced the world. My earliest symptoms began with involuntary movements in my toes. Over time, they spread to my fingers, arms, legs, upper body, and face. My balance became unpredictable, and I experienced hundreds of falls.
When your body moves without permission, it can become difficult to trust it.
The result was that I became self-conscious of how I looked in public. I worried that people would assume I was intoxicated, unstable, nervous, or behaving strangely. Sometimes, I tried to hide my movements by crossing my arms, wearing fitted clothing, or pretending I was stretching.
Hiding didn’t make me feel safe, though. It only taught me to feel ashamed of something I couldn’t control.
My concerns were also physical. At different times, I needed a cane, walker, and shower chair. Stairs, slippery floors, crowded spaces, long hallways, and unfamiliar environments made me anxious. I was always preparing for the next fall, misunderstanding, or insensitive comment.
I didn’t finally feel safe in my body again because my symptoms disappeared. It happened because I developed a plan, accepted support, and changed the way I treated myself.
The right combination
Working closely with my medical team has been an important part of this process. Medication helped me gain more control over some of my movements and other symptoms. Finding the right treatment plan required honest conversations, follow-up appointments, adjustments, and a willingness to speak up when something wasn’t working.
Medication doesn’t cure Huntington’s, but it has given me more stability. That stability helped me begin trusting my body again.
Today, I live my life with intention. I think carefully about how I use my time and energy. I no longer push myself simply to prove that Huntington’s hasn’t changed me. I understand that honoring my needs isn’t giving in to the disease. It’s how I protect my health and quality of life.
Monitoring my stress is essential, because stress can increase my movements, affect my balance, interrupt my sleep, and make it harder to think clearly. I pay attention to signs that I’m becoming overwhelmed. I may notice tension in my body, racing thoughts, anxiety, fatigue, or more noticeable movements.
When those signs appear, I respond. I may step away from a stressful situation, change my schedule, meditate, journal, practice breathing exercises, or spend time in a quiet environment. I’m also intentional about the people, situations, and commitments I allow into my life.
Boundaries are one of the ways I create safety.
Rest is another. In the past, I sometimes believed that resting meant I was weak. I felt that I had to keep going to prove that I was still capable. Today, I understand that rest is part of my wellness plan.
When my body tells me it is tired, I listen. I take breaks, avoid overcrowding my schedule, and give myself permission to cancel or reschedule plans. Some days, choosing rest over productivity is the most loving thing I can do for myself.
I also create physical safety by planning ahead. I wear supportive shoes, use handrails, move carefully on stairs, and ask for assistance when needed. When I travel, I prepare for long walks, crowds, delays, and other situations that may increase my fatigue or anxiety. I use accommodations without shame because accepting support helps me maintain my independence.
Mindfulness has also helped me reconnect with my body. Meditation, breathing exercises, yoga, and qigong allow me to notice what I am feeling without immediately judging it. Instead of thinking, “My body is failing me,” I ask, “What does my body need right now?”
Sometimes it needs medication, food, water, movement, fresh air, reassurance, or rest.
Self-compassion is one of the greatest forms of safety I give myself. I no longer criticize myself for needing extra time, experiencing symptoms, or having a difficult day. I remind myself that I am living with a progressive neurological disease and doing the best I can.
I speak to myself the way I would speak to a coaching client, a close friend, or someone I love. I allow myself to feel frustrated or disappointed without turning those feelings into shame. I do not measure my worth by my productivity or by how well I can hide my symptoms.
My body may move differently, but it is still my home. Today, I listen to it, protect it, and care for it with intention. I no longer see my body as the enemy. I see a body that has carried me through illness, fear, healing, and tremendous growth.
It deserves patience, protection, dignity, and love.
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.
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