An Unfamiliar Road:
Living with a chronic illness is not unlike driving down an unfamiliar road; you are never quite certain what lies ahead of you. It's important to remember that even unfamiliar roads can be negotiated, and the same is true of chronic illness. There are maps that show you where you're going, guidebooks to help you know what to do along the way, and other people who have been down the road before you. Knowing what to expect and doing what you can to cope with whatever comes your way can help you negotiate the road ahead.
Living with a chronic condition can pose enourmous challenges, physically, emotionally, and financially. But your illness doesn't have to control you. There are many ways to gain better control of your health and maintain the best quality of life possible, and many places to turn to for help (I will include a resources list at the end of this article series).
Chronic illness may demand adjustments in many aspects of your life, and learning to accept and cope with that fact is part of the process of managing your illness. Remember, you don't have to do it all at once: set achievable goals for yourself and take one step at a time!
Understand Your Illness:
1. Ask your doctor for information; a good doctor that cares about his patients long term wellness should be able to provide materials or recommend books, articles and websites that will be useful to you. I have "fired" more than one doctor who was too busy to talk to us and offer guidance in accessing useful resources for patient and caregiver education.
2. Visit your local library or bookstore to research yoru condition. You want to ask the right questions and understand what alternative care and supportive therapies are clinically sound and helpful in your individual case. By learning as much as you can you will be able to have a useful conversations with your healthcare team from the start.
3. Learn what symptons to expect how to manage them, and what might cause them. It will help you greatly if you can prepare yourself emotionally, spiritually and intellectually for the daily challenges that may or may not become a part of your life eventually. Learn how to identify signs and symptons of progression, what is your new "normal" and what isn't.
4. Contact relevant organizations and ask about free information packets, support groups and referrals to other organizations that may offer free services and useful resources in areas which you may need help and guidance. (I have a number of useful resources, links and articles listed in our blog and I will include a new one in this article series at the end.)
Join a Support Network or Group:
Several small studies of people with metatastic breast cancer or melanoma showed an association between participation in support groups and longer life. Not just longer life for longer life's sake but quality of life!
Many patient organizations coordinate support networks; try to find one that deals with your individual major specific condition as the lead support system and if possible, secondary support groups for your co-existing disorders.
Learn how other people deal with common problems and what strategies they have found useful for managing symptons. common problems and coping with lifestyle adjustments.
I belong to an autoimmune condition support network as my primary source of personal support, a group for reproductive cancer survivors, a traumatic brain injury survivors caregivers alliance and I check in from time to time with a cancer moms network. They have all helped me tremendously in different areas of my life and I am sure they can be very helpful to you too.
About the Author: Wilma Colon Ariza is the founder of Stevie JoEllie's Cancer Care Fund a Thyroid Cancer Awareness, Access to Care and Free Supportive Services Nonprofit