By Amy Stenehjem,M.D
I’ve written this article to help educate those who want to learn about chronic illness. It is written from my perspective, that of a doctor who treated patients with chronic illness for many years, and who spent five years of my life homebound due to chronic illness.
I want to spread awareness so that friends, family, employers, coworkers, and health care professionals can better understand chronic illness. My hope is that an increase in awareness will help strengthen relationships, reduce misunderstandings, and improve support systems for those with chronic illness.
About Chronic Illness
Chronic illness is a disease, condition, or injury that can last years or a lifetime and is typically not curable, though in some cases it may go into remission. It can vary in its severity, with some people able to work and live active or seemingly “normal” lives; while others are very sick and may even be homebound.
Many people with chronic illness have an invisible chronic illness. The severity of their symptoms is not clearly noticeable, which may lead to a lack of understanding and support from doctors, family, friends, and coworkers.
1. Nobody wants to feel sick.
In all my years as a doctor treating patients with chronic illness, I never saw a patient who enjoyed feeling ill. I saw the opposite, patients who were once very active, desperately trying to find answers and treatment for their overwhelming symptoms.
2. Many doctors don’t understand chronic illness.
For years, doctors were under the misperception that some chronic illnesses were caused by depression or anxiety and the only treatment available for these patients was psychiatric care.
Despite medical evidence disproving this perception, some doctors are “set in their ways” and do not truly understand chronic illness or how to appropriately address it. Therefore, patients often have to spend precious time searching for a doctor who understands their illness and provides appropriate treatment options while their symptoms potentially worsen.
3. Being unable to work is not a vacation.
Those who are not able to work due to chronic illness are not “on vacation.” They are instead, struggling every day to do simple tasks: getting out of bed, getting dressed, making a meal, bathing, etc. They are often homebound, too sick to leave their homes except for doctor appointments.
Have you ever been stuck indoors for a couple of days due to bad weather or a temporary health issue? Remember feeling annoyed with the inability to leave your home and be active? Now imagine not being able to leave your home for weeks or months at a time. Frustrating, right?
4. Chronic illness can trigger many emotions.
Chronic illness itself can change the biochemical makeup of the mood control center in the brain. In addition, frustrations such as the following can affect a person’s mood and lead to depression and/or anxiety:
- the wait/search for a diagnosis
- inability to work and feel productive
- change in family dynamics
- loss of social interactions and isolation
- financial stress
- the struggle to deal with symptoms and perform simple daily tasks
Those with chronic illness often feel a great loss. It is not unusual to experience some or all of the stages of grief (i.e. denial, anger, bargaining, depression, acceptance). They grieve for the life they once lived. They grieve for the life they must endure now. They grieve for the life they dreamed of having.
Many people with chronic illness also feel very isolated. Even though they crave social interactions, their symptoms may make it very difficult and at times impossible to talk on the phone or type an email or Facebook post.
5. The symptoms of chronic illness are very complex.
The symptoms experienced by those with chronic illness vary depending on the illness; however, many people experience some or all of the following symptoms: extreme fatigue, pain, headaches, brain fog, nausea, and/or dizziness.
It is not unusual for the symptoms of chronic illness to wax and wane over time (sometimes even from hour to hour), so planning activities ahead of time can be very difficult. A “good day” for those with chronic illness would likely be considered a sick day for most others.
6. Chronic illness fatigue is much more than being tired.
Fatigue is a common symptom in chronic illness and in many cases it is severe, often debilitating. It can be easily triggered by simple daily activities or by more elaborate events such as holidays. Those with chronic illness will often have to “pay the price” for engaging in an activity and then require days, weeks, or even months of recovery.
Those with chronic illness may need to rest often and may have to cancel events last minute. This does not mean they are lazy or trying to avoid activities. Once fatigue kicks in, there is no other option other than to rest. It’s as if the body “hits a wall” and can’t go further, no matter what. To better understand the fatigue and limited energy of a person with chronic illness, read this helpful article about the spoon theory.
Have you ever been stuck in bed for a few days from a really bad infection, surgery, or hospitalization? Think back to how that felt. You could barely get out of bed and simple tasks were exhausting. Now consider feeling that way every day, all day, for months or years?
7. Pain is a common symptom in those with chronic illness.
Those with chronic illness often experience severe pain, including headaches, joint pain, muscle pain, nerve pain, back pain, and/or neck pain.