Learning that you have a serious illness that will limit your life can evoke a multitude of feelings, fears, concerns, questions and may make you feel like you have no control over your life any longer. You may feel alone and numb and that other people close to you can’t understand what you’re going through. At the very least, learning what to expect and knowing about your options will help you feel more in control at this difficult time.
Exploring hospice and palliative care options may be a good next step to find out how they can help manage pain and other symptoms and provide support to you and your family as the impact of such news can have emotional, physical, spiritual, and practical implications.
Studies have also shown the positive impact and importance of maintaining social support and staying connected to others as you continue to enjoy social activities. It can make a world of difference in your outlook as your disease progresses. Here are some brief examples of what you might experience and questions that might be raised.
Emotional— You will face a wide range of emotions over time, and in no particular order. It’s important to remember that there is no “right” way to feel. You may find support by talking with others who are facing similar situations through books, your faith system, or within your network of family and friends. You may experience
- Fear of what will happen as your illness progresses, or about the future for your loved ones;
- Anger about the change in diagnosis; about past treatment choices;
- Grief about the losses that you have had and those to come;
- Anxiety about making “the right” decisions and facing new realities;
- Disbelief about the illness and changes that will be taking place;
- Relief in knowing what your illness is and being able to decide on future care;
- Loneliness because you feel different from your “healthy” friends and family members.
Physical—As your illness evolves you may also notice new physical changes. Accepting that this illness cannot be cured does not mean that “nothing more can be done.” In truth, when the focus shifts from cure to care, a great deal can be done to relieve physical pain and emotional suffering, and to ensure a good quality of life. Learn about care and support options early on, before your care needs change. You may
- Have difficulty participating in your regular activities and tire easily;
- Experience changes in sleep—you may feel exhausted, or have difficulty sleeping;
- Feel renewed energy, if your treatments change and your symptoms are controlled.
Spiritual—Dealing with a serious illness can bring spiritual strength and deepen your personal sense of faith and spirituality. For some, it may challenge you to question your beliefs, while others may not experience any change with regard to spirituality and faith at all. Thinking about spiritual issues is very common when coping with a serious illness. Don’t be afraid to reach out to your spiritual leader or faith community for help or support. Some things you might encounter include
- A deeper sense of faith;
- Questioning your faith beliefs;
- Exploring the meaning of your life; wondering what your legacy will be;
- A new understanding of or focus on spirituality that did not previously exist.
Practicals—You can have a great deal of control over what you want and don’t want for your care and treatment as your disease progresses. With planning, you can ensure that your wishes are known in case you can no longer express them. Have conversations with your loved ones about what you do and do not want and take steps, such as signing advance directives, to ensure that your wishes are followed and your family is supported. Designate a healthcare agent to speak for you in the event that you can no longer speak for yourself. During this time, you may feel
- A desire to take care of legal and financial matters;
- Fear about how others will do what you have always done for your family or at your job—this may include a need to teach others what you know;
- A need to gather information from healthcare professionals, the Internet, and others about your illness, care options, and experiences of others;
- Concern that your wishes and choices for care are known and respected.
Facing a change in prognosis or news that of a terminal illness is challenging in the best of circumstances and brings with it a whole host of tough decisions. Talking honestly about a serious illness with family and friends can be difficult for everyone involved but it can also bring opportunities for some realizations and revelations.
Use this time to examine your priorities and values, and share them with those you love, and don’t hesitate to communicate your wishes, hopes, and fears with loved ones.
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