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Chronic Illness
Navigating the Medical World With a Chronic Illness
A practical guide for improving quality of life in medicalized circumstances.
Posted November 18, 2022 Reviewed by Tyler Woods
Key points
- Knowing the practical implications of entering the medical world as a patient can improve one’s quality of life immeasurably.
- Chronic illness entails nurturing a tolerance for waiting, choosing appropriate doctors, and building a network of nonmedical support.
- Achieving balance between managing one’s illness and enjoying other activities in life is crucial to one’s health.
This post is addressed to people with chronic illnesses, but may also inform caregivers, relatives, and friends. I am a former caregiver, but I write as a psychologist and as a person who recently acquired a lifelong illness. This post is about practical matters in navigating the medical world that typically don’t show up online or in pamphlets from the doctor’s office—with recommendations that may run counter to conventional wisdom.
Reading First-Person Accounts
In addition to learning the relevant medical information about our chronic illness, we should also read first-person accounts that share the lived experience of others with our condition.
Medical summaries of chronic illness provide useful terminology and valuable descriptions of diagnosis and treatment, but they are devoid of lived experience. People with progressive neurological diseases, for example, may develop “foot drop”—an accurate, descriptive phrase from an observer’s point of view, and thus objective. But its very objectivity omits the poignant awareness of lacking the strength to move one’s legs and knowing the weakening will worsen. Only firsthand accounts connect with our own perceptions.
Choosing Our Doctors
People are advised to find the most esteemed specialist with the best reputation, which makes sense—depending on the illness and one's resources and location. But persistently consulting with friends and pursuing online ratings and testimonials to locate the best doctor is a potentially endless endeavor. Identifying a short list of appropriately-trained experts should be sufficient. And if results aren’t successful with our first specialist, then that specialist may recommend another.
Importantly, just as we can apply for more than one job at a time, it is permissible to set up appointments with more than one doctor on our shortlist.
People initially focus on warmth at the beginning of a long-term relationship, but then later focus on competence after that relationship is established. The same holds true when choosing doctors. Initially, we are drawn to doctors who show warmth and empathy, which is certainly helpful. But we should also attend to creative competence, at least as much as examination-room manner. We want both, but ultimately we will value skill and the ability to treat our illness.
Waiting and More Waiting
We should expect to wait for an appointment with a specialist, often as long as six months. Basic numbers create this problem: there are many people in need of help and few doctors. Even so, it’s beneficial to call the appointment office every so often (once a week) to check on cancellations.
Once at the appointment, there will probably be more waiting. Scheduling procedures can cause considerable delays, with patients stacked up like planes at O’Hare Airport. At the specialist’s office, we have the right to inquire how long the delay will be, just as we have the right to expect a patient-friendly approach to scheduling. (I spent a week at the Mayo Clinic with more than a dozen separate appointments for tests and consultations, and with every appointment, the doctor was either on time or early.)
After our first set of appointments, we may need to wait even longer for a diagnosis, especially with neurological disorders and autoimmune diseases.
Limiting the Search for Information
Once we feel reasonably confident about the nature of our illness, its cause (if known), and its treatments, we should pull back and stop gathering more and more details. Immersion in medical information about our illness takes us away from daily living.
Thinking ahead is necessary, but spending extensive time imagining a diminished future detracts from enjoying the present and can prematurely constrain us. We are allowed to have fun and not work exclusively on managing our condition. We don’t need to think about the disease all the time.
Seeking Palliative Care
Palliative care encourages connection with one’s full humanity and with family and close friends. After the diagnosis of a long-lasting or life-threatening disease, palliative care can relieve pain, lessen difficult symptoms, address emotional needs, and solve practical problems. And it complements medical treatment from primary doctors. To find out more, begin here.
People don’t need to be dying to receive palliative care. While it does serve patients with life-threatening or terminal illnesses, palliative care may begin at any stage of an illness, not just the advanced stages or the final months of life. Directories locate the closest palliative professionals.
Taking Care
We should continue taking care of ourselves, in ways other than directly managing our illness: going to the dentist and the optometrist, seeing our primary care doctor, eating healthy foods (while also indulging in necessary treats), exercising, spending time with supportive, fun people, and feeling free to turn down invitations from those who aren’t helpful. We don’t want an abscessed tooth or an unnecessary social conflict in the midst of ongoing and substantial health concerns.
Preparing Appropriately
Before visiting medical specialists, we should set aside time to write down our questions. If possible, we should also take a friend or loved one with us to our appointments for another perspective and for support.
When losing capabilities, practical matters matter. While we consider actual decline and anticipated decline, we will have a changing, temperamental list of questions that need to be recorded, edited, and elaborated. We should prepare for likely needs, without letting this preparation dominate our current lives.
Avoiding Overwhelming Advice
Friends and casual acquaintances will offer well-intentioned advice and potential cures: diets, vitamins, supplements, acupuncture, cannabis, movement techniques, energy healing, different views of spirituality. Feel free to explore these remedies. After all, conventional medicine may have limited answers or none at all. But avoid an overload of suggestions. We are not obligated to try every idea that people offer. Outside conventional medicine, focusing on the basics is most helpful, primarily diet and exercise.
Being Fully Human
Most appointments focus on symptoms and clinical examination, but we also need to inform our doctor how the illness is affecting us personally and professionally. We may then be referred to counseling and support groups.
Learning to Ask for Help
We need to learn our new limits and to ask others for assistance. We cannot depend solely on a medical team to help us.
If we live alone, we should assemble a strong and reliable support network and educate them on what we need, while also keeping their needs in mind. Friends, neighbors, family members, and friends of family are all good candidates. And we should communicate specifically about how they can help—for example, taking us grocery shopping, assisting us in cleaning our house or apartment, bringing in our mail, checking in on us after a tiring medical procedure. If we live with someone, we should consider that person's well-being and work together to arrange an appropriate support network.
No one expects serious illness. We expect autonomy. With illness, however, we need to shift our expectations and learn to ask for help.
