By agebuzz Contributing Editor Julie Buyon
BOOM! A few words from your doctor can make it feel like your world is imploding. Suddenly, the path you’ve been on has a big detour or may change altogether.
Learning that you have a serious illness can feel like suddenly waking up in a foreign land. It is bewildering. You don’t know how you got there, how to speak the language, how to get around without a map, what the customs are, or how you are going to find your way home. You need a seasoned tour guide.
If you have found yourself traveling in “the kingdom of the sick,” (a phrase coined by writer Susan Sontag), consider me your tour guide to help you find your way. Here is an itinerary. (Click on the links to learn about each topic in greater detail.)
Get Organized: Having a serious illness can feel scary and overwhelming. Being organized helps you feel much more in control. An essential first step is to get a marble composition notebook. Everything gets written down in that notebook – appointments, notes from conversations, physician referrals, advice from others, your questions for your doctor – all the notes from all discussions with physicians, tests ordered and their findings, medications taken, conversations about insurance, etc. This notebook, which easily fits into a purse or small bag, will keep all important information easily available and will make you feel less overwhelmed.
Your Goals for Your Care: Identify what is most important to you and how you want to live your life. Communicate these priorities and values to your family and your health care team. Don’t assume they “just know” because they know you.
What does a great day look like to you? For me, a great day would include meaningful work, making pottery, spending time with my family, walking my dog, and having a great book to read before bedtime in my home. For me, that is a high quality of life, so any decisions I make about medical treatment should be in service of helping me live my life that way.
What is your vision of a good life? Articulating your vision clearly will help you address fears and hesitations that come with considering important treatment choices, and evaluate those choices in the context of how they help you achieve that vision.
Find a Partner in Your Care: Get a second opinion from a specialist (or two). Make sure that your doctor understands what is important to you and what your goals are. The doctor is the medical expert – you are the YOU expert, and the combined expertise is necessary.
Educate yourself: Learn about your condition so you can understand your diagnosis, treatment choices, and prognosis. Do some research so you can ask questions that will be helpful to you. Seek out others who have also had this condition and get their experiential advice. Ask them, as well as your health care team, “What will my life look like in treatment/with this condition?” and “What will my life be like after treatment?” Straightforward answers to those questions will be invaluable in making choices about treatment.
Get As Much Support And Help As Possible: Don’t hesitate to ask for help – people love to help out because it makes them feel good about themselves. Accepting help is one of the ways you can help take care of your family even while you are ill so that they are not overwhelmed by helping to care for you.
Think of organizing assistance as if it were a company, and you are the CEO. A good CEO knows how to delegate, so put people who want to help in charge of specific “Departments,” such as Transportation (transporting you to doctors appointments), Catering (meal coordination and grocery shopping), Research (about anything you need more information about), Finance (insurance matters, paying bills), Facilities Management (medical equipment, housekeeping, household maintenance), Communication (keeping friends and family updated), et al. These “Department Heads” can then delegate specific tasks to others who want to help out. Read about some terrific free online ways to organize assistance – great for a few friends and family or dozens of them.
Don’t overlook local support organizations. Many disease-based organizations (such as The American Cancer Society, The Alzheimer’s Association, The Crohn’s and Colitis Foundation, The ALS Association, et al) have both national and local organizations that provide invaluable information, advice, and support. Their services are almost always free. Find many of these organizations on the agebuzz Helpful Resources page.
Get specialized medical support: Do you deserve expert management of your symptoms, help from professionals who will take time to listen to your concerns, help with the fear and uncertainty that serious illness brings, use honest and plain language in discussing your condition and treatment choices? Who doesn’t deserve that kind of care? This specialty is known as palliative care and is focused on improving the quality of life for both the patient and the family by providing relief from the symptoms and stresses of both chronic and life-limiting illnesses.
As the website Get Palliative Care explains, palliative care is provided by a specially-trained team of doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
If you don’t know about palliative care, you’re among the 71% of Americans who have little understanding of what it is, including many physicians. (Disclosure – I have worked as part of a palliative care team in a hospital and am in awe of how this care can transform lives.)
More than half the states in the US have passed legislation to promote palliative care and make it more accessible and available to patients. Nearly three-fourths of US hospitals with more than 50 beds offer palliative care, and 94% of large hospitals (300+ beds) offer this specialty, so there’s an excellent chance that it is available through the hospital where you are receiving care. This directory can help you find a program.
Get Your Ducks in a Row: Being sick can make you feel like things are out of control. Harmful things are happening in your body without your knowledge or permission. The trajectory and rhythms of your daily life have been interrupted. The plans you made may now be in flux. It can be pretty unsettling. Control what you can, and get things in order. Help care for your loved ones by pulling together important materials – such as financial documents, internet passwords, advance directives for health care, contact information, et al. and make it easier for them to help you. Create a “Be Prepared” or “Just in Case” kit of important paperwork, just in case you become very ill – and make sure others know where to find it if needed.
I have been seriously sick several times, and it stinks. But what I learned about navigating my first illness made the subsequent illness journeys far, far easier on both me and my family. As a frequent visitor to the kingdom of the sick, I hope this guide can make the journey easier for you.
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor
Julie Buyon is a palliative care patient advocate. She has professional and personal expertise in assisting people with complex illnesses navigate the health care environment. Julie’s role is to help patients feel empowered, and her agebuzz posts are intended to make sure agebuzz readers have all the tools and info they need to advocate for themselves and their loved ones. Julie would love agebuzz readers to email her at [email protected] with any questions or problems encountered with the health care system, and she will do all she can to address those issues in upcoming blog posts. She also welcomes feedback regarding her advice or recommendations. Read all of Julie’s agebuzz posts here and get in touch with Julie now at [email protected].