Navigating a New Normal: 9 Tips for Living With a Terminal Illness
Finding out you have a terminal illness can feel like your world is turned upside down. It’s a deeply personal experience. It can come with a whirlwind of conflicting emotions, such as shock and disbelief, or it can make you feel numb.
No two experiences are the same, and your path is unique to you. As you navigate this new reality, you might find comfort in connecting with others who empathize with what you’re going through. Alternatively, you might prefer to seek solace within yourself.
Whatever you choose, it’s important to honor your feelings and take things one step at a time. We aim to offer some guidance and support as you navigate this new phase in your life’s journey. Here are nine tips that we hope can help.
1. Know that there is no “right” or “wrong” way to process
Receiving a terminal diagnosis is an incredibly personal experience. Everyone processes such news differently, and that’s perfectly okay. You might feel a mix of emotions like anger, sadness, or even a strange sense of calm. All these feelings are valid.
It’s important not to feel pressured by anyone to respond in a certain way. Some people might encourage you to stay positive, while others may expect you to feel devastated. There’s no need to conform to others' expectations. Your emotions are your own, and it’s crucial to honor them.
Allow yourself the space to feel whatever comes naturally. Give yourself permission to experience and express your emotions in your own unique way.
2. Determine who you want in your close circle
Sharing your diagnosis with others is a very personal decision. Think about who you trust and feel comfortable with. It’s okay to take your time before sharing the news.
Once you decide to tell people, be clear about what kinds of support you need. Some people might offer practical help, while others may provide emotional support. Surround yourself with loved ones who both uplift you and respect your boundaries.
Remember, you don’t have to include everyone. It’s important to have a close circle of people who genuinely care about you and respect your wishes. Choose to be with people who bring you comfort and peace. It’s also perfectly fine to change your mind about who you want in your circle as your needs evolve. Your emotional well-being is the most important priority.
3. Reflect on how you want your life to look moving forward
After a terminal diagnosis, it’s natural to think about what you want from the time ahead. Some people find comfort in maintaining their daily routines, while others may wish to change things up.
Consider what makes you happy. Do you want to spend more time with loved ones? Do you have dreams or activities you’ve always wanted to pursue? There’s no right answer. Give yourself permission to make it all about what feels fulfilling to you.
4. Coordinate with your care team for support
Your medical team is there to support you through this journey. It’s important to communicate your wishes and ask questions about your care options. Discussing these different topics can bring you a sense of control and peace.
Make sure you understand the practical aspects of your care, such as power of attorney (POA) and advanced directives. These steps ensure that your wishes are respected and can help ease the burden of decision-making on your loved ones.
Your care team can also connect you with resources and support services to help manage your symptoms and maintain your quality of life. Don’t hesitate to lean on them for guidance and assistance.
They’re experienced in helping patients navigate these challenges and can offer valuable advice. Building a strong relationship with your care team can make a significant difference in your experience.
5. Practice self-care
Self-care is essential, especially during challenging times. Treating yourself to little joys can make a big difference in your overall well-being. Whether it’s indulging in a favorite dessert, watching a beloved movie, or taking a relaxing bath, moments of pleasure matter.
Self-care doesn’t have to be extravagant. It’s about doing things that bring you comfort and happiness. Maybe it's a hobby, spending time with a pet, reading a good book, or enjoying nature. Find what soothes your soul and make time for it.
Treating yourself is not a luxury—it’s a necessity. These small acts of kindness toward yourself can provide strength and comfort on tough days. You deserve moments of joy and peace, no matter how small they may seem.
6. Give yourself an emotional outlet
Finding ways to express your emotions can be cathartic. You might choose to simply talk about your feelings. Art, poetry, or even screaming into a pillow can also be powerful outlets. Each person finds different methods of coping, so explore what works best for you.
CaringBridge, for example, is an online health platform where you can share your journey with your circle. It allows you to write about your experiences, seek support or advice, or just vent. You can decide whether to make your posts public or visible only to your close community.
The key is to let your emotions out in a way that feels safe and healing for you. Don’t be afraid to try different forms of expression to find what truly helps. Emotional release is a healthy and necessary part of coping. Let your feelings flow in whatever way brings you relief and comfort.
7. See loved ones on your own time
Spending time with loved ones can be comforting, but it’s important to do so on your own terms. You don’t owe anyone your time or energy. It’s okay to set boundaries and prioritize your needs.
Loved ones may not always understand the space you need. They might express their grief, sometimes in ways that can be overwhelming. Communicate your limits gently but firmly. It’s important for your well-being.
Surround yourself with those who respect your wishes and make you feel supported. You have the right to control your social interactions based on what feels best for you. It’s perfectly fine to say no if you need time for yourself. Your comfort and peace of mind come first.
8. If able, talk with mental health professionals or doulas who specialize in palliative care
Talking to someone who specializes in palliative care can provide immense support. Mental health professionals and end-of-life doulas understand the unique challenges you’re facing. They can offer coping strategies and emotional support tailored to your needs.
It’s okay to ask for help when you need it. These professionals are trained to provide compassionate care and support for people living with a terminal illness. Even a few sessions can make a significant difference in how you cope. Don’t hesitate to reach out for the support you deserve.
If your resources or energy are limited, look for low-cost or no-cost options. Many organizations offer virtual counseling, which can be more convenient and accessible. Remember, seeking professional help is a sign of strength, not weakness.
9. Know that it is strong to ask for support from your circle
It’s natural to want to handle things on your own, but requesting help is a sign of strength. Your friends and family likely want to help but may not know how. Don’t hesitate to delegate tasks or ask for specific types of support.
Practical help, with things like grocery shopping or laundry, can ease your burden. Emotional support, such as having someone to talk to, is equally important. Lean on your community—they’re there for you.
CaringBridge can also help coordinate practical help from the people in your circle. It’s a way to keep everyone informed and to manage offers of assistance efficiently. Letting others help can also give them a sense of purpose and connection.
You’re not alone in this journey, and it’s okay to rely on the people who care about you. Reaching out for support can bring comfort and strength to both you and your loved ones.
What tips would you share?
Navigating through living with a terminal illness is incredibly challenging, but you’re not alone. By focusing on what brings you comfort and seeking support when you need it, you can find your own path forward.
We invite you to leave your stories and tips in the comments below. Your thoughts and experiences can make a difference in someone else's life. Whether it's a small piece of advice, a comforting word, or a practical tip, your contributions are important. Together, we can create a supportive community where everyone feels understood and cared for.