How to live with a chronic disease?

What is a chronic disease?

Summary

What is a chronic disease? Accepting the disease Living with a chronic disease Impact on social life Impact on professional life Impact on intimate life

Diabetes, asthma, fibromyalgia... Living with a chronic disease on a daily basis is far from easy.

According to the World Health Organization (WHO), a "chronic disease" is a long-term condition that evolves over time.

It is not always easy to recognize a person with a chronic disease. Yet, this type of disease is responsible for 17 million deaths worldwide each year1. In France, it is estimated that 15 million people (approximately 20% of the population) are affected by a chronic disease2 compared to 30% of the population in Canada3.

Depending on the severity and degree of disability, these diseases may include diabetes, heart disease, cancer, stroke, hypertension, polyarthritis, multiple sclerosis, Crohn's disease, Alzheimer's disease or Parkinson's disease.

Accepting the disease

A phase of revolt and incomprehension often follows the announcement of the disease and can last several months. Some conditions require the consultation of a psychologist since it is essential that the patient accept his or her illness. Then, it will be a matter of learning to live with it. This implies changing one's lifestyle: healthy eating, the need for physical activity, taking medication, etc...

The doctor who diagnoses a chronic disease plays a fundamental role: he or she guides the patient and presents him or her with solutions while making him or her understand that there is no definitive cure for the disease.

Daily life with a chronic disease

Personal development is essential to be able to continue living as normally as possible. The patient is active and contributes to his treatment. After the shock following the announcement of the chronic disease, it is necessary to acquire skills in order to reorganize one's life with the pathology.

The first step is to understand the illness and to be able to talk about it to those around them. Then, the patient must learn how to self-manage, by being able to diagnose and take charge of himself in the absence of the caregiver. It will often be necessary for the patient to organize himself according to his illness without letting it take control of his life.

Daily life with a chronic disease

At the age of 26, I suffer from ankylosing spondylitis...

"Very physically active, I had wanted to become a professional firefighter since I was 8 years old. My life was all about sports... One day, I started to have a little pain in my feet after some training sessions. I reduced the intensity and frequency of my activities. But the pain didn't stop and soon became unbearable... A blood test was enough to put a name to my disease: Ankylosing Spondylitis. My dream was shattered when I realized what it meant...

Impact on social life

Most of the time, it is a latent suffering that is not always obvious to family and friends. Patients are led to find a meaning to their pathology: we speak of a real teaching since they have to learn how to deal with it. It is necessary to admit that one is not in good health but to continue to live as normally as possible so as not to alter one's "taste for life".

Among family and friends, you must "dare" to show your illness and affirm it. The close entourage plays a key role in the acceptance of the disease and in the way the patient will perceive himself: they must really participate in the treatment of the chronic disease.

I suffer from familial hypercholesterolemia

"At 21 years old, I've had familial hypercholesterolemia since I was born. It is an hereditary disease. I was born with a very high level of "bad" cholesterol... Around 18, student life got the better of me: I ate less healthily and practiced less sport. To restore my cholesterol level, I had to follow a very strict diet that made me lose 10 kg in 3 months. I very quickly felt "excluded". People thought that my diet was only meant to make me lose weight, which many people didn't understand. 

The impact on working life

The professional environment is often an additional source of tension for people with chronic pathologies .

Pain, fatigue, or frequent medication use can be embarrassing for the patient who often refuses to be seen as "sick". In addition to having to reconcile work life with treatment or rehabilitation, the patient sometimes has to endure condescending looks from colleagues and sometimes has to deal with daily pressure from his or her hierarchy.

In any case, it is advisable to be as transparent as possible: communication will be decisive. Some companies may offer part-time jobs or adapt the employee's working hours and duties if his illness prevents him from performing certain tasks (e.g. carrying heavy loads). In some cases, however, sick leave is still the only solution, which will once again force the sick person to reorganize his or her life.

Testimonial :

At 43 years old, I am diabetic

"It took me a very long time to accept my illness. At first, I had to take two shots, then I gradually had to go to five a day... At work, I had made the choice to hide the existence of my diabetes: I was hiding like a drug addict. And it's not easy in the workplace... When people see you taking out your "equipment", they often have a backsliding movement. This disease was forcing me to live a life without deviation, without insanity, and it isolated me socially.

The impact on intimate life

A fulfilled sexuality would be synonymous with good health and quality of life.

In the case of chronic illness, sexual functions are not impaired. However, the pain, depression or discouragement that sometimes surrounds the condition can lead to a loss of sexual desire and satisfaction. Communication within the couple is essential: talking to one's partner about what one is feeling (pain, self-loathing, etc...) is essential to avoid sexual frustration. It is advisable to have sex at a fixed time of day when the pain has subsided and when you feel most desirable. Tenderness within the couple outside of sexual intercourse will be essential to resume a fulfilling sexuality. Sexuality should not rhyme with "performance" but with self-discovery, discovery of the other and mutual fulfillment.

Testimonial :

I suffer from fibromyalgia

"I've had fibromyalgia for 12 years, but I've only been able to put a name to this disease for 5 years and it took many years to be diagnosed, at least in my case! It almost destroyed my relationship... At the beginning, I felt very tired but I blamed it on an intense family and professional life. Having 2 young children and a fascinating job, life was going at 100 per hour, and I had less and less time (and desire?) to devote to my spouse.