Having a life-threatening illness can send the individual and their family into a crisis tailspin. You may prefer to deal with these stressful things on your own but we don’t recommend it! Sharing your concerns and experiences can often be helpful both to you, and members of your support system.
Once the shock has worn off, the real work of dealing with day-to-day life begins. Living daily with a debilitating illness means you will need to learn to alter your life, your role, and expectations of yourself. Here are some suggestions on how to cope with these changes.
#1 Come to Terms with the Loss of Your Role
The struggle of coming to terms with the loss of your role as the family provider, caregiver, active and involved parent etc., is not easy. You may expect that you will be able to do all of the things that you could do before. Finding a new rhythm and routine that works with your new level of functioning can be a long process. The challenge is learning how to redefine your roles, letting go of some of the ones that are less important and maintaining the ones that are more important. The question you may wish to ask yourself is “how can I still feel involved in the roles that are important to me, without compromising my health?” Communication with family members and friends will help ease this transition.
Learning to accept help when offered can ease the burden on the patient and caregiver but is not something we are socialised to do. Western society prides itself on individualism and independence. Dependence is viewed by some as a weakness. Being able to accept some of your own limitations, both physically and emotionally, will be helpful to both you and your caregivers. Accepting help from friends and extended family members will take some of the pressure off of you and your immediate caregivers. Remember: you would want to help them if the tables were turned!
Realise that even though this is a terribly awkward situation for you, it is for those around you as well. Some family/friends may not "step up to the plate" initially due to fear of upsetting you or not knowing what to say. Express to them that sometimes just saying, “I don’t know what to say or do” is just as helpful and supportive. This will help you deal with loved ones that perhaps disappoint you at first.
Many patients struggle with their new title as “sick person”. Walking through daily life with the knowledge of their diagnosis is a heavy burden. We often don’t know what to say to our friends and family about the illness. Planning what you will say to colleagues, acquaintances and family is helpful. Often the patient does not want to make others uncomfortable or sad; however, keep in mind that people want to know how you are doing and what they can do to help.
When you’re feeling better and getting ready to fully reintegrate into life, making this transition can be very difficult. Sometimes people have become very used to the role of patient, and family members have become used to managing the tasks that the patient is now ready to take on. This again will be a time for renegotiating and communication. Caregivers will have to learn to give up some control over certain tasks, while you may face the challenge of being expected to take on tasks and roles you have not performed in a long time.
You’ll also need to face the knowledge that in many ways life has gone on as usual for many people. New contacts and colleagues may have no idea what you have gone through over the past several months or years, and what impact it has had on your everyday life. It is okay to let people know of your past experiences and how they have affected you. This can often help people in your life understand your perspective on many issues.