“I'm a Doctor With Chronic Illness. Here Are 12 Things I Wish People Knew." was published on The Mighty.
Written 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.
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.
8. Brain fog is extremely frustrating.
Brain fog is frustrating because it is a difficult symptom to describe so that others understand its impact. Brain fog is a cognitive dysfunction common in chronic illness, which can include issues with word finding, concentration, and recall. Those with brain fog often know what they want to say, but can’t find the thoughts or words to communicate effectively.
9. There is a greater risk of dangerous infections.
The immune system in those with chronic illness may be overactive and instead of attacking infections the chronic illness immune system wastes time and energy fighting the body’s own organs, joints, nerves, and/or muscles. Many people with chronic illness are on medicines to suppress their overactive immune systems and consequently, need to avoid being around sick people. A minor cold in a healthy person could progress to a dangerous infection in someone with chronic illness.
10. Certain foods can aggravate symptoms.
Certain foods may aggravate the symptoms of those with chronic illness. Common culprits are gluten, dairy, sugar, soy, yeast, alcohol, and processed foods. These trigger foods increase inflammation which can cause a significant increase in symptoms which may last for hours or days (sometimes weeks).
Because so many of these trigger foods are in our diet, it is often difficult to pinpoint which foods aggravate symptoms and staying away from favorite foods can be a challenge.
11. Sensitivity to smells is common.
Certain smells including perfumes, colognes, cleaning agents, and smoke can trigger headaches, brain fog, nausea, and other symptoms in those with chronic illness. Also, some of the medicines used to treat chronic illnesses are low-dose versions of chemotherapy drugs. The sensitivity is similar to that seen in those who are pregnant or on chemotherapy and have a sensitivity to smells.
12. It takes a lot of effort to manage chronic illness.
Those with chronic illness have to be very regimented to make sure they get adequate rest, avoid trigger foods, take medications at the correct times, and avoid flares. It is understandable that sometimes they just want to feel “normal” and eat some pizza or stay up late, even if they know they will “pay for it later.”
Despite struggling with grief, isolation, and often debilitating symptoms, those with chronic illness (and their caregivers) warrior on. They fight daily to be able to understand their bodies and to do things others take for granted. They are often surrounded by a society that does not understand their challenges, and therefore, is unable to provide adequate support.
You can make a big difference in the lives of those with chronic illness by learning more about their symptoms and approaching them with compassion and support. Gaining an understanding of chronic illness will help make these conditions less “invisible.” This is why it is so important you are taking the time to read this article. Thank you!
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This story was originally published on Mastering Health & Happiness.