I am writing this article in the hope of informing those who wish to learn more about chronic diseases. I speak from experience: I have long been a patient with this condition, but I have also been stuck in my home for five years because of a chronic illness .
I want to educate our friends, family, colleagues and medical staff to better understand this condition. If this information is shared, it will help, I hope, to strengthen relationships, reduce misunderstanding and improve the management of these chronic patients.
It is an illness, a state of health or an injury that can last a lifetime, and that can not be cured, even if the patient can go into remission in some cases. Its severity varies: some people can work and have a “normal” and active life, while others are very sick and remain closed at home.
Many people with chronic illness have no visible symptoms. Their severity is sometimes not remarkable, which can lead to misunderstanding and lack of support from doctors, relatives or colleagues.
1. Nobody wants to be sick.
As a doctor, I have never seen a single patient who appreciated his illness. It was the exact opposite: most were very active and suddenly found themselves with mountains of questions and treatments to alleviate insurmountable symptoms.
2. Many doctors do not understand chronic diseases.
For years, many thought that some of these illnesses resulted from depression or anxiety disorder, and that psychiatric help was the only effective treatment.
But, despite many medical advances in the field, many doctors refuse to get up to speed and do not know how to tackle the problem. At the risk of having their symptoms worsen, some patients lose precious time looking for a doctor who can correctly diagnose them and prescribe appropriate treatment.
3. Not being able to go to work is not synonymous with holidays.
Being unable to work because of a chronic illness is not a pleasure. It’s a daily struggle to do the simplest things like getting out of bed, getting dressed, eating, and so on. Illness often requires patients to stay in bed outside their medical appointments because they are too weak to step outside.
You have probably already been stuck at home because of bad weather or bad flu. Remember the frustration you felt because you could not get out of the house. Now imagine that you are stuck in your home for weeks or even months. It would be frustrating, no?
4. Having a chronic illness can trigger an overflow of emotions.
This medical condition can alter the biochemical composition of the areas of the brain that control emotions. There are also other factors that can affect a person’s mood and make them depress or worry a little more:
- waiting or looking for a diagnosis
- the inability to work and feel effective
- changes in how the couple / family works
- a loss of social interaction that leads to isolation
- the stress of money
- the constant fight against the symptoms and to perform simple daily tasks
Chronic diseases often create a feeling of emptiness. It is not unusual for patients to go through all stages of grief (denial, anger, bargaining, depression and acceptance). They mourn their life before and the one they must now endure.
The feeling of isolation is also very strong: even if the patient wants to interact socially, his symptoms can prevent it. He finds himself unable to make a phone call, write an email or post a message on Facebook.
5. Symptoms related to a chronic illness are very complex.
Symptoms vary according to the disease, and patients can present one or more at a time. Here is a non-exhaustive list: intense fatigue, pain, headaches, inability to concentrate, nausea or dizziness.
There is nothing unusual about these symptoms appearing and disappearing regularly, sometimes even within an hour. Planning your activities in advance becomes a real headache. A “good day” for a patient with a chronic illness could be considered a “bad day” by someone else.
6. The exhaustion that results from a chronic disease is not a simple blow of slack.
Exhaustion is a common symptom that can be very severe, even debilitating. A mundane activity or a larger event, such as the holiday season, can trigger it. Patients must “pay the price” and need several days or even weeks to recover.
They therefore need a lot of rest and often cancel trips at the last minute. This does not mean that they are lazy or that they are stealing. When exhaustion falls on the person, she has no choice but to stay at home to rest. It’s as if the body was hitting a wall and could not go any further, no matter how hard it was. If you want a little better understanding of this exhaustion related to a chronic disease, I invite you to read this article on “the theory of the spoon”.
You may have been bedridden for a few days after a bad flu or surgery. Think back to how you felt: you could barely get out of bed and you were exhausted by simple gestures. Imagine that you feel this every day, constantly, for months or years.
7. Pain is a common symptom of chronic diseases.
This condition is often accompanied by severe pain, such as headaches, arthritis, muscle pain, lumbar or cervical pain.
8. Not having clear ideas is extremely frustrating.
It is a complicated symptom to describe. Mental fog is a common cognitive dysfunction in these patients, and it can manifest itself in different ways: it’s hard to find words, to focus or to remember something. People who suffer from it know what they want to say but do not find the right words.
9. The risk of infections is higher.
The immune system of people with chronic disease can sometimes react excessively. Instead of attacking infections, he will waste time and energy fighting the body organs of the patient, or the joints, nerves or muscles. Many people with these disorders take medication to regulate this problem and must avoid contact with sick people because a cold can turn into a very serious infection.
10. Some foods can make the symptoms worse.
Some foods can make symptoms worse. The most common culprits are gluten, dairy products, sugar, soy, yeast, alcohol and processed foods. These trigger foods can cause inflammation that, in turn, causes an increase in symptoms. These can last for hours, days, or even weeks.
And because all of these foods are part of our daily diet, it’s often difficult to identify those responsible. No longer integrating them into our plates becomes a challenge.
11. The sense of smell is more developed.
Some odors, such as perfumes, household products or cigarettes, can trigger migraines, mental fog, nausea and other symptoms. Underdosed versions of drugs used for cancer treatments are sometimes prescribed. This sensitivity to odor is similar to that observed in pregnant women or patients treated with chemotherapy.
12. Living with a chronic illness takes a lot of effort.
It must indeed be disciplined to be sure to have a restful sleep, avoid triggers and take the drugs at the right time so as not to aggravate his medical condition. Whether these chronically ill people sometimes want to feel normal, eating a slice of pizza or staying up late, is understandable, even if they will “pay” for it later.