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It’s the start of a new year, why not start it with a resolution to make it the best health year of your life. When it comes to living the best life we can, every person has choices. There are even more choices for those who face a chronic health condition daily today than just 6 years ago; if we know how to get access to them. We can either let the disease control us, or learn to understand the US healthcare system and take control of the disease. According to the Institute of Medicine report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research (IOM, 2011), 116 million Americans live with a chronic condition that causes pain. These are incredible numbers: one in three Americans face pain every day. If you are not one of these people, you probably know someone who is.
Coping with a chronic pain condition takes hope and self-awareness. You can make it through the toughest of situations. I know because if I can do it, anyone can. I have been facing an autoimmune condition, Reflex Sympathetic Dystrophy (RSD), for fourteen years now. Through my struggles and finding my way, I have gained knowledge that will help others cope.
The first goal should be getting a correct diagnosis. If visits to multiple providers are needed, take the time to do it now, to help prevent your health from deteriorating in the future. Each provider has a specialty, as well as treatment options with which he or she is comfortable. This does not always mean that a particular option is right for you, or that another option will not work. If you are not comfortable with the options offered by your current provider, find one whom you trust to try different treatment options.
Take charge of your disease instead of letting it rule you. Some doctors, friends, and even family members can say, “Just live with it,” or, “Get used to it.” But you are the one who lives with this chronic condition. You can learn to live with it, and to manage life around the symptoms and problems, without losing yourself.
Living with any chronic condition is very different from having an acute illness. Dealing with a kidney stone or a torn ligament can be very aggravating, but at least there is an end in sight. You can get back to “normal life” once the stone passes or the ligament heals. Other conditions, such as high blood pressure, heart failure, diabetes, Lyme disease, multiple sclerosis, RSD, sickle cell disease, arthritis, osteoporosis, or neuropathy, can be more of a challenge and may last a lifetime.
In 2003, GlaxoSmithKline funded research on Chronic Care in America to study and improve the patient-physician interaction. There were 3,000 adult patients and 1,000 doctors who completed the study on living and coping with a chronic condition. Many of the patients in the study who believed they were successful in managing their chronic condition saw it as a long-term or ongoing challenge. In other words, once you understand that your condition may not be cured with short-term treatments, you can begin to comprehend that the management of your condition will be ongoing. This is a factor in successful outcomes.
A person in pain experiences a loss of quality of life. This can be due to financial burdens, loss of social support, and/or depression that may occur after the condition has developed. Depression can result in isolation and loss of self-esteem. It is important to recognize that persons with chronic pain conditions need support in order to maintain a positive attitude and to accept that there will be life changes. Some changes will be easier – altering our diet or beginning a physical therapy routine. Other changes will be more difficult, such as having to sever ties to a family member or friend who is hindering our recovery. We also need the support of our health care providers. But most of all, we need to recognize that we are responsible for ourselves and that successful treatment may necessitate lifestyle changes that only we can make.
We all deserve to have our pain taken seriously. Having the pain managed instead of under-treated, untreated, or over-treated is an important aspect of successful treatment. Pain must be managed effectively and in a timely manner. The underlying condition needs to be addressed while the pain is being managed. Do not assume that your provider knows how to treat your pain. Every patient is different; it is up to you to become the chief of staff of your health care team and to make sure you have a strong team willing to help, learn from, and treat you. You need to have the proper health care professionals on your team, in order to receive effective relief and to be able to organize and manage all aspects of life. Finding good health care and support systems will decrease the number of hospital visits, the amount of time spent in the hospital, unnecessary trips to the emergency room, repeated tests, and inadequate treatments, all of which contribute to the high costs of health care.
The consequences of pain can also be shown when looking at its cost to our society. According to the Institute of Medicine report (2011), the cost to Americans yearly is as high as $635 billion. Approximately 40 million Americans between the ages of 30 and 49, suffer from migraines. Chronic pain is a disease in itself. Recognizing this and changing our practices to focus on prevention instead of only treating the person after the fact could bring down the cost of care. For instance, teaching children about good posture and body alignment, and having them practice it, can help them keep the habit throughout adulthood, decreasing the incidence of back issues that lead to the need for chronic care.
Setting expectations is important in challenging life situations. You can become an expert on your condition by doing research and keeping a journal. When you and the people around you understand your illness and the treatment options, you will be better able to prepare and cope with the situation. Being knowledgeable about your illness from the research you keep track of in your journal can help you relieve fear, but the information needs to come from reliable sources. You can get condition-specific information from health care providers, your pharmacist, the internet, support groups, and local and national charities.
Getting organized is very important. It will take work in the beginning, but it gets easier as you go, and can save you pain and challenges down the road. What do you do first? JUST ASK! If you do not understand something about your illness, treatment, and the side effects or outcomes of treatment, do your own research. Ask your resources and find the answer before you make a decision that will affect your life. You must be comfortable with what you choose; otherwise, gather more information until you are confident about the decision you make. Keep asking until you understand the explanation. It is your right to know how you may be affected by any treatment option. Track your goals, questions, progress, and physical and emotional health, so that you can better talk to your providers. By keeping a journal, you can become an expert and begin to educate health care professionals, friends, and family about your condition.
Take care of your emotional well-being. This is as important as taking care of your physical well-being. Seeing a psychologist or psychiatrist is not something of which to be ashamed. Most people going through significant health challenges need support. A chronic illness is one of the most stressful situations you will ever face. Pay attention to your emotional balance. If you are depressed, anxious, or feeling less secure in your situation, be sure to talk your feelings over with someone. This should be charted in your journal so that you can see patterns and expand your understanding. These patterns should be communicated with your support team, which in addition to health care providers should include family, friends, and mental health professionals.
I live by the motto, “Never give up, never give in.” This can only be accomplished if you take responsibility for yourself and your treatment choices. Get regular updates on your progress, eat a healthy diet, communicate with your health care team, and practice relaxation techniques. Discussing your care, fears, and triumphs with your health care team gives you the opportunity to become secure, comfortable, and reassured in your treatment options and daily living. Searching the literature and maintaining your journal can help you feel more in control of your illness and treatments. Plan your time, plan your care, and learn to relax in your decisions.
The first few years of a chronic illness are stressful times, and these techniques can help you figure out your next steps, your daily living, and your physical and mental boundaries. Set the expectation for yourself and those around you as soon as you can. Plan your time so that you can still accomplish important activities to help keep your life fulfilling even though you have changed from the person you were before.