As a physician I have seen first-hand the different ways people face very similar diagnoses. Some face the challenges head on, in a very proactive and determined manner, while others succumb to the burden of their chronic illness. As a patient I recognize how easy it is to follow the second path and how much effort and planning it takes to forge the former. My challenge has been Young Onset Parkinson's disease, a diagnosis I received over 16 years ago. Regardless of our diagnosis, the fundamental approach is the same -- we must be active participants in our medical care if we are to learn to optimize our quality of life despite chronic disease. These are 10 ways to make yourself an active participant in the management of your chronic medical illness.
1. Educate yourself. You don't need a medical degree to become an informed patient. And being an informed patient will help optimize the management of your disease. Become familiar with the potential symptoms of your illness, what treatments are available and forthcoming, how your medications work and possible side effects. This way you are prepared not only for the course your illness takes but you are better able to ask relevant questions, understand the suggestions and information relayed by your physicians and coordinate your medical care.
2. Choose the right medical professional. Of course it is important to choose a physician who is qualified and experienced, but it is also important to be under the care of someone with whom you have great rapport. The physician-patient relationship can be a long-term one and one that is only successful if you not only have trust in their medical expertise but also feel your concerns are being heard and addressed.
3. Be prepared for your appointments. As a physician I know too well the time constraints that are built into a normal patient encounter. And there are many medical issues that need to be addressed during that short appointment time. We all have experienced that feeling as we leave our physician's office having forgotten to discuss one or more issues that were of primary concern to us, knowing that they will likely go unanswered until our next follow-up appointment. That is why it is important to prepare any questions or concerns you may have ahead of time, write them down so that those issues are sure to be addressed. And if memory is a problem, consider taking someone with you.
4. Be consistent. When dealing with a chronic illness, routine is paramount. You will do better if you adhere to a strict schedule with regards to your medications, sleep, exercise, meals and so forth. It is also important to make regular appointments for medical follow up and treatments.
5. Build your care team. We are not islands unto ourselves, and we do best when surrounded by a team of caring individuals who work with us to optimize how we live with this disease. Along with your physician, this team may consist of other health professionals in the areas of physiotherapy, occupational therapy, nutrition, counseling or others. The team will vary for every individual and will depend on age, stage of life, illness and life circumstances. But in every case, you must lead that team because only you know how this disease is impacting your life and in what areas you require assistance.
6. Determine your quality-of-life goals. It is of course important to adhere to certain routines, restrictions or medications in order to successfully manage your illness and those hallmark symptoms that define your disease. It is also important to maintain your quality of life, to address those symptoms or side effects of treatment that are interfering with your ability to enjoy life. Because what defines quality of life is such a subjective determination that varies from individual to individual, you must be clear in your communication of those goals to your medical team. Once they are aware of what aspect of your disease is the most bothersome, then they can address that issue specifically. Until the day we find a cure, we need to, as physicians and as patients, concentrate on improving quality of life -- improve daily existence, increase productivity, improve interpersonal relationships. It really is all about quality of life.
7. Optimize your health in every other way. Just because you are dealing with a chronic disease does not make you immune to other health problems. So it's important not to neglect your general health. Keep up with your annual physical exams, relevant screening tests (mammograms, prostate exams, routine blood work, etc.). And most importantly make those lifestyle changes that will give you the best possible health outcomes -- exercise regularly, make good food choices, sleep well, manage your stress. By optimizing your health, you will be better prepared to face the challenges of your chronic disease.
8. Extreme self-care is paramount. Taking the time daily to nurture your physical, emotional and spiritual needs will allow you to live better with your illness. If you neglect yourself, your life experience will suffer as will your ability to care for others and to remain productive.
9. Become your own advocate. In order to successfully navigate the medical system, you must be comfortable advocating for yourself in a productive manner. Only you know if the care you are receiving is helping you to achieve the quality of life you are seeking. If there are issue that are not being addressed either because your concerns are not being heard or there are logistical issues such as calls not being returned or tests not being booked, then you must follow up and express your concerns in a respectful manner. Addressing those concerns in a respectful way is important as it avoids putting others in a defensive position by your demeanor.
10. Participate in clinical research. The drug development process to get a medication from the lab counter to the pharmacy shelf can take decades and a staggering amount of funding. About half of that time is spent in clinical trials. The issue is that very few of us actually participate in clinical trials. In fact, approximately 85 percent of all clinical trials are delayed due to recruitment issues and a staggering 30 percent fail to recruit a single participant. What an incredible waste of resources and, most importantly, time. Time, which is something that those of us facing chronic illness, just don't have. The truth is that the only way to discover better treatments and ultimately a cure for any disease is through clinical trials. Therefore we as a patient community have to recognize our critical importance in this process and participate, fundraise and promote clinical research.
You must be actively involved in the management of your disease in order to live well with a chronic illness, actively seeking solutions to problems that arise and take on a proactive approach to life in general. Being a passive bystander won't get you the quality of life that you seek.
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