Dealing with anger while living with Huntington’s disease

Anger is a powerful emotion that many people living with Huntington’s disease face regularly. This neurodegenerative disease causes changes in the brain, often leading to mood swings, irritability, and, for some, aggressive behavior. These emotional shifts aren’t a reflection of our character, but a byproduct of how the disease affects our brain chemistry.

Knowing that, however, doesn’t make dealing with anger or its triggers any easier.

When I was diagnosed with Huntington’s in 2012, anger became a dominant emotion in my life. It stemmed from a mix of grief, frustration, and the endless challenges of living with this disease. Over the years, I’ve encountered many triggering situations, from strangers’ ignorance to dismissive comments from healthcare workers and family members. These encounters often make me feel like I have to defend the reality of my condition.

One of the most difficult reactions to process is when someone questions my diagnosis. One person commented, “I don’t buy it,” doubting I was symptomatic because I “didn’t look sick enough.” Others have made comments like “You can’t be as sick as you say you are.” These remarks cut deep. They invalidate the daily struggles I face and perpetuate a harmful stigma.

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For those unfamiliar, the number of CAG repeats in the HTT gene can be a marker of Huntington’s severity. Most healthy people have 10 to 35 repeats of this sequence, while 40 or more repeats almost always means a person will develop the condition. I have a CAG repeat count of 39, which some have said “isn’t like everyone else” with the disease, implying that my symptoms are somehow less valid.

Another comment I’ve received is “You just don’t fit the narrative for Huntington’s,” as if there’s a singular way this disease is supposed to look. These statements often leave me feeling invisible and dismissed, which can spark a surge of anger.

I’ve also been told that I was “cursed by God” because I have Huntington’s.

Finding ways to deal with my anger

So how do I deal with this anger? It’s been a journey, but I’ve learned to use several tools and strategies to manage it constructively.

Leaning on my therapist has been one of the most helpful ways to process my anger. Having someone who validates my feelings, listens without judgment, and offers coping strategies has made a world of difference. Talk therapy has taught me to identify my triggers and explore ways to de-escalate before my emotions overwhelm me.

Through therapy, I’ve also learned the power of reframing. Instead of internalizing dismissive comments, I remind myself that ignorance about Huntington’s is widespread. When someone doubts me, it says more about their lack of understanding than it does about me. My therapist has helped me build a mental toolbox of affirmations and reminders that I don’t owe anyone an explanation of my illness.

Mindfulness has been another lifesaver in my journey to manage anger. When I feel anger bubbling up, I try to ground myself in the present moment by doing breathing exercises, and I’ll redirect my emotions by listening to music or going for a walk.

Mindfulness doesn’t erase the anger, but it allows me to respond to it with greater awareness and less impulsivity.

In addition to therapy and mindfulness, I take mood stabilizers and antidepressants to help regulate my emotions. These medications have made a noticeable difference in my ability to handle stressful or triggering situations. They don’t eliminate the anger, but they give me the emotional stability I need to work through it without feeling consumed.

When faced with dismissive or invalidating comments, I’ve learned that not every statement requires a response. There are times, however, when I feel compelled to educate or advocate for myself. Here’s how I handle these moments:

• Setting boundaries: If someone questions my diagnosis or makes an uninformed comment, I calmly state, “I’d prefer not to discuss this further. My health journey is valid, and I don’t need to justify it.”
• Redirecting the conversation: For those genuinely curious but misinformed, I explain, “Huntington’s looks different for everyone. My symptoms and experiences are part of that spectrum.”
• Protecting my energy: Sometimes the best response is no response. I remind myself that I don’t owe anyone my energy, especially if their words come from a place of judgment rather than understanding.

Finally, self-compassion has been vital in managing my anger. When I feel angry, I remind myself that it’s OK to feel this way. Living with Huntington’s is incredibly challenging, and emotions like anger are valid. Instead of beating myself up for being upset, I try to speak to myself as I would to a friend: with kindness, patience, and understanding.

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.