Living With a Life-Limiting Illness
When diagnosed with a life threatening illness our world shifts. Time becomes thought of ‘before’ the illness to ‘after the news.’ Your world feels as if it’s been thrown off kilter, and spinning out of control. You may feel completely lost, like swimming in a deep ocean where you can’t see the shore. But there are ways to learn to cope with the emotional distress, regain a sense of control and preserve your quality of life.
What is a Life-Limiting Illness?
A life-limiting illness is a condition that cannot be cured and shortens a person’s life. However, with the right care, people can still live as well as possible for as long as they can. Besides treatment, an important part of living with a life-limiting illness is coping with the overwhelming emotions that this diagnosis brings.
Hospice vs Palliative Care for Life-Limiting Conditions
Palliative care can be offered at any stage of a serious illness and often alongside curative treatment. It focuses on symptom management, quality of life, and emotional/spiritual support. People may be in palliative care for years.
Hospice care is a subset of palliative care, provided when a person is no longer pursuing curative treatment and is likely in the final 6 months of life. It focuses purely on comfort and peace.
Emotional and Psychological Dimensions of a Life-Limiting Diagnosis
A life-limiting diagnosis can turn your whole life upside down. A life-limiting illness or condition can completely change how you engage with yourself and the world around you. The way you feel and think about yourself and your life. Every person has a unique journey, but some thoughts and feelings are common.
1. Loss of Identity
Many patients feel their identity eroding as their abilities diminish. They may say: “I used to be strong. I was the one everyone depended on. Now I can’t even get to the bathroom without help.” This isn’t just sadness—it’s mourning the slow death of a version of themselves. For someone who was independent or caregiving for others, this is disorienting and deeply painful.
2. Overwhelming Grief
Ambiguous grief occurs when the person is still alive but not who they once were. Anticipatory grief is mourning their future—missing moments that haven’t happened yet, like grandchildren growing up or future family milestones. This is true for both the patient and the family.
3. Depression, Apathy, and Existential Crisis
Depression is common—but often underdiagnosed because symptoms of depression (fatigue, appetite loss) often mimic symptoms for most life-limiting conditions. Apathy often accompanies depression, but apathy is about detachment or dissociation from things. When things feel meaningless, you might find yourself asking questions like, “Why try anymore?”. Depression and apathy, in the context of life-limiting conditions, can include or lead to feelings of existential distress. You might find yourself questioning the meaning of life, the purpose of a legacy, or asking yourself questions like “Was it all worth it?”.
Ways of Coping With a Life-Limiting Illness
These feelings can be overwhelming, but it’s important to realize that you are not powerless. There are ways to help you cope with the stress, fear, hopelessness, anger and sense of having no control over your life. Coping techniques can help you find a way forward.
Understand Your Emotions
Many of us are taught that emotions like fear, anger, and depression are a negative reflection on ourselves and should be avoided. But when living with a life-limiting illness these emotions are normal and even expected. You might feel tempted to “retreat” inwards to evade what you are going through. You might feel the urge to “give up” on your situation because it feels like you’ve become a burden to loved ones. Understanding and acknowledging your emotions, rather than denying them, will be important to your ability to live better with your illness.
Find What Works for You
Some people look for inner strength and clarity by engaging in meditation, reconnecting with their religion or finding solace in nature. Others focus on legacy-building and taking control over the things they can, like how they want to spend their time and making arrangements for after they’ve gone. Leaning on loved ones for support can also be very powerful.
Everyone has different ways to cope. Finding what works for you and knowing that you can overcome difficult emotions will help you feel less overwhelmed the next time these feelings come.
Accept the Uncertainty
When you’re diagnosed with a life-limiting illness you feel like you are living with a lot of uncertainty for what your final moments will feel like. Reflecting on the physical, emotional, and intellectual challenges of our final moments feels more overwhelming if there is reason to believe it will be extra hard. Knowing what some of those challenges might be doesn’t necessarily make it easier – rather – it sometimes makes it more difficult.
Explore Your Choices
It’s easy to get stuck focusing on the “what ifs”. Knowing how to deal with the uncertainty of your future can feel impossible and overwhelming. How do you move forward?
This is an important time to focus on what’s best for you and your loved ones, and how YOU want to spend your time. Explore your options, even if you don’t need to make a choice right away: is palliative care right for you? Would you rather go to hospice? These are hard decisions to make but having a plan will help you deal with the uncertainty and find some peace.
Focus On Today
For some, powerful emotions like dread and despair can make it challenging to move forward. For others, apathy might interfere with taking any steps. Focusing on today, on the immediate challenges happening now, helps many people put one foot in front of the other. Worrying about what might happen won’t give you more predictability about your future or any more control. But it will most certainly rob you of today and the good things you are still able to enjoy. Focus on the present. If you are having trouble handling uncertainty on your own, consider working with a counselor or therapist to find your way through these difficult emotions.
Let Others Uplift You
Living with a life-limiting illness can feel isolating. It’s difficult to connect with others when they don’t share your condition or have something very similar. It might start feeling easier – one step at a time – if there are opportunities to connect with others facing life limiting conditions (and even their caretakers). If you can accept a change in your existing relationships, explore the possibility that your loved ones have more to share than you knew before. It’s also OK to feel like something is missing from your current relationships.
Seek out these much-needed connections by leveraging support groups and counseling services. Let others help you find those resources, too. Finding ways to accept empathy and help from others is critical to alleviating some of your burden. It can feel easier to connect with everyone in your life if you have all of your needs met.
Social support helps us feel less helpless in general, especially when battling illness and disability. There is an abundance of evidence suggesting social support is linked with lower depression [1], lower anxiety, and lower hopelessness levels among depressed individuals [2]. Social support enhances quality of life and provides a buffer against adverse life events. Find a few, or even one, family member or friend you can confide in and lean on. Let others uplift you during this very difficult journey.
Be Kind to Yourself
Our self image can easily crumble when dealing with a serious illness. Your image of yourself may change. You may have considered yourself strong, brave, and fearless before your diagnosis. You may feel you are not a whole person anymore, but have become lessened by the conditions of your illness. Realize that you are learning to deal with a new normal, one that may have been completely out of the blue and unexpected.
Our character is built from our past experiences, challenges and adversities that we’ve handled in life. It becomes our roadmap for life. But sometimes, no matter what precautions you did or didn’t take, our bodies and minds may have other plans for us, and it can turn everything you knew upside down. It will take time to learn to adjust. Be kind to yourself.
You might feel less strong or brave or fearless than you were, and that’s OK. Exploring different ways to cope with your illness can help you adjust to your new normal. You can find your way back to yourself, even if it looks a little different than before. Doing a life review might help you gain a new perspective on your journey and reconnect with your story.
Find New Joy
Reconnecting to what brings you meaning, purpose and joy can help you feel less constrained by your illness. Embracing what gives your life meaning will help you regain the sense of self and purpose that you may feel you have lost. If you cannot enjoy some of the activities you once loved because of your medical condition, you might need ways to discover new passions or activities that help you feel more connected. Explore new hobbies or new experiences – nature, the arts, crafting, writing, baking, or even volunteering. Find something that will nourish your soul.
Treating Life Limiting Illness with Palliative Care or Hospice
Facing a life-limiting illness can be overwhelming, but you don’t have to do it alone. Palliative care can help make this time more manageable, and if you don’t feel capable of pursuing curative treatment, hospice care might be an option for you. Our team is dedicated to providing comfort, reducing pain, and supporting your emotional and physical well-being. We focus on improving as much of your quality of life as possible, helping you regain control and peace of mind.
You deserve to feel supported and cared for—connect with Ascend Health to learn how hospice and palliative care can help you live more comfortably during this challenging time. We hope these techniques will help, and remember, reaching out for help can make a world of difference.
References
1 – Social support and protection from depression: systematic review of current findings in Western countries. Published online by Cambridge University Press: 02 January 2018
2 – The Importance of Social Support in Mental Health, BENSON MUNYAN, PH.D., July 16, 2021