Setting healthy boundaries is crucial in life with Huntington’s disease

Living with Huntington’s disease (HD) means navigating a world of unpredictability — fluctuating symptoms, physical limitations, emotional challenges, and the stigma that often comes with a chronic illness. Setting healthy boundaries has been crucial to managing my energy, maintaining relationships, and living my best life despite the hurdles.

Following are seven ways I’ve learned to set boundaries that prioritize my well-being and help me thrive:

1. Listening to my body and respecting its needs: The most important boundary I set is with myself: listening to my body and honoring its limits. HD often leaves me fatigued physically and emotionally in ways that others might not notice. This means I must assess my energy levels daily and decide what activities I can handle.

For example, I’ve learned to say no to plans that might stretch me too thin. If my body signals that it needs rest, I respect that, even if it means canceling commitments. Communicating this with loved ones has helped me avoid feelings of guilt. They now understand that prioritizing my health is a necessity, not a choice.

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2. Communicating my limits clearly: I used to struggle with telling people when I needed help or when something wasn’t working for me. Over time, I realized that open communication about my needs and limits helps set expectations and reduces misunderstandings.

For instance, I might tell a friend, “I’d love to join you, but I can stay for only an hour,” or ask a healthcare provider, “Could we meet virtually instead of in person?” This kind of transparency ensures that I’m not overextending myself and that others know how to support me.

3. Setting boundaries around my energy: HD can sap my energy in unexpected ways. Whether it’s due to physical symptoms or emotional stress, I have to be mindful of where and how I expend my energy. I’ve created a personal rule: I won’t invest energy in activities or relationships that drain me without adding value to my life.

This means walking away from negativity or toxic situations that don’t serve my well-being. It’s not always easy, but the peace and balance I gain from protecting my energy are worth it.

4. Advocating for myself in medical settings: Navigating the healthcare system with HD can be overwhelming, and I’ve faced my fair share of skepticism and stigma. To set boundaries, I’ve learned to advocate for myself by preparing for appointments, asking questions, and being firm about what I need.

For example, I no longer tolerate dismissive attitudes or rushed appointments. If a healthcare provider isn’t taking my concerns seriously, I speak up or, if necessary, seek a second opinion. My health is too important to let anyone’s doubts or biases interfere with my care.

5. Creating space for emotional boundaries: Living with HD means dealing with emotional ups and downs, both my own and those of the people around me. Sometimes, well-meaning friends and family ask intrusive questions or offer unsolicited advice that feels overwhelming.

I’ve learned to protect my emotional boundaries by politely redirecting conversations or setting limits on what I’m willing to discuss. For example, if someone asks about my prognosis in a way that feels invasive, I might say, “I appreciate your concern, but I prefer not to focus on that right now.” This helps me maintain control over my narrative and emotional state.

6. Establishing boundaries in social settings: Social settings can be particularly challenging with HD, especially when symptoms like chorea or fatigue are more noticeable. In the past, I’ve felt pressure to keep up appearances or explain my condition to strangers.

Now, I set boundaries by planning ahead and preparing for what I need. For example, I’ll choose seating that’s comfortable for me, inform hosts if I need a quiet space to rest, or simply step away if I start feeling overwhelmed. I’ve also learned to let go of the need to explain myself to strangers. My health comes first, not their curiosity.

7. Prioritizing time for self-care: Self-care isn’t selfish; it’s essential. I’ve learned to carve out time for activities that nourish my mind and body, whether it’s meditation, journaling, or simply sitting quietly with a cup of tea. Setting this boundary means protecting my time from interruptions and making self-care a nonnegotiable part of my routine.

For example, I turn off my phone for an hour each day to focus on myself without distractions. This practice helps me recharge and face life’s challenges with more clarity and resilience.

Why boundaries matter

Setting boundaries isn’t always easy, especially when living with a condition like HD that others might not fully understand. However, these boundaries are acts of self-respect and self-preservation. They help me maintain my independence, protect my health, and foster meaningful relationships with people who truly support me.

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.