A diagnosis of a chronic disease or life-limiting illness can be devastating. You may find your mind begins to wander. Questions may arise and feel too overwhelming to even consider. How can I manage my illness while maintaining as much independence as possible? How can I reduce the burden of caring on my family members and loved ones? What does this mean for my future, my interests and hobbies, my work life and my home life? Do I need to consider end-of-life care? Engage in advanced care planning such as choose a Power of Attorney for personal care and property? Will I have the supports I need from the community and do I have the finances to cover my needs should I need additional care?
While managing illness, especially chronic illnesses such as cancer, diabetes, COPD or respiratory illness, heart disease such as CHF and mental health diagnoses can at times be overwhelming, there are things you can do to reduce anxiety, increase independence and improve your quality of life.
Seek and maintain adequate medical support. A key piece to managing chronic disease is to have access to appropriate medical care. It’s important to see your doctor regularly to ensure the best care possible, and to develop the best treatment plan for your disease. Your doctor can also link you to specialists that have expertise in your illness, and who can support you throughout the trajectory of your disease. Some hospitals offer Chronic Disease Management clinics where you can go to learn more about strategies in managing your illness. Ask your doctor if you are eligible for a program like this in your area.
Find answers to your questions. People who have recently had a diagnosis of chronic or life-limiting illness often report that when they met with their doctor and heard the diagnosis (e.g. cancer, diabetes) their mind went blank. They often report that immediately their mind began wandering, they lost focus and forgot everything the doctor said to them which left them feeling overwhelmed, with a million unanswered questions and unsure of where to turn for support. When living with a chronic illness, it is important to arm yourself with as much information about your disease as you can, so that you can feel comfortable in understanding and developing the best plan moving forward for you (along with support of your medical team and loved ones, of course). If you have questions, make another appointment to see your doctor with the sole purpose of learning more about your disease, symptoms and symptom management and treatment options. You may also want to join support groups to liaise with others living with the same or a similar condition. Peer support is a great strategy to reduce isolation while learning more about managing your illness.
Ask for what you need. There is a lot of anxiety that can come with the unknowns related to managing chronic illness. What if I have to take my medications when I am out in public? What if I need help climbing the stairs? What if I fall and need support getting up? I encourage my clients to practice asking for what they need during times when they feel comfortable, like at home with their spouse, so that if the time comes that they may need support in public they are now armed with the skills and confidence to ask for support. Knowing that you are capable to ask for help should you need it, can lead to an increased sense of independence and feeling that you have control over your disease rather than the disease controlling you. Give it a try.
Plan ahead. Sometimes people find that managing the scheduling of appointments, taking medications, ensuring proper diet and exercise regimes, while maintaining a life that is pleasurable, can be overwhelming. Maintain an up-to-date calendar of all appointments and events. Keep a binder or notebook with lists of current medications, emergency contacts, hospital contact information, should your family or caregivers need access to that information. Use technology to manage appointments and set reminders in your cell phone to keep you on top of your to-do lists. Find a strategy that works for you and stick with it.
Plan even further ahead. Everyone should plan for the future, regardless of having a disease diagnosis or not. Consider sitting down with your family or loved ones to discuss your wishes for your care in the future, should you no longer be able to express your wishes at a time when it is important for your care. Develop a power of attorney document with the support of your lawyer, to identify whom you delegate to make decisions on your behalf for personal care and to manage your finances should you no longer have the capacity to do so. Talking about future care and taking the time to complete the legal paperwork necessary will allow you to be confident that should the time come that you need support, your bases are covered.
Remain positive. Remember that managing chronic disease happens one day at a time. Try your best to stay present, appreciate the positive and recognize your accomplishments and joys each day. Life is a journey and it is not the end goal that offers joy but often the little moments in between. Practice self-compassion and allow yourself permission to be human with struggles, challenges and ups and downs. Notice times you feel positive and keep track of them. Start a notebook and on tough days, look back on how far you have come and give yourself credit for the hard work you have put in to reach where you are today.
Megan Rafuse, Psychotherapist
