In France, fibromyalgia affects 2 to 3 million people. Pain, exhaustion, gastrointestinal problems, cognitive impairment … When the disease sets in, it is the whole life of the patient that is upset. How to continue working when you are fibromyalgic? Are there suitable solutions? We take stock with Ghyslaine Baron, vice-president of the Fibromyalgia SOS association.
What is Fibromyalgia?
The Fibromyalgia is a complex disease that medicine is still struggling to understand. Recognized by the World Health Organization (WHO) since 1992, it is characterized by many symptoms: localized chronic pain (“spots” throughout the body), sleep disorders, anxiety, dizziness, digestive disorders, depression, exhaustion …
Fibromyalgia (also referred to as fibrositis, polyenteropathy or diffuse idiopathic polyalgic syndrome) affects 3% to 5% of the French population, 75% of whom are women. In total, this represents 2 to 3 million French – including 300,000 in severe disabling situation.
According to the scientists, there are 3 stages of the disease: stage 1 (daily life is partially affected), stage 2 (the pathology is well established, pain is intense, day and night, and relations socio-occupational disorders are disrupted) and stage 3 (the patient is disabled and isolated).
Read: Fibromyalgia, hypnosis to reduce symptoms.
What impact does fibromyalgia have on work?
In November 2015, the SOS Fibromyalgia Association published the results of a large national survey, carried out on-line on 4536 people. The results speak for themselves:
- For 68.5% of patients, fibromyalgia is a hindrance to the smooth progress of their careers .
- 57.3% of unemployed respondents lost their jobs due to fibromyalgia.
- 70% of working patients say that their employer does not recognize fibromyalgia and does not take illness into account in the organization of their work.
I am fibromyalgic, should I continue to work?
According to Ghyslaine Baron (based on a report by the Academy of Medicine published in 2007), it is preferable to continue working when suffering from fibromyalgia: “the work first makes it possible to operate the muscles: it is known, it is important to maintain its muscle mass when one is sick in order to limit the pains “.
Second argument: morale. “Fibromyalgia is not a psychological illness,” hammers Ghyslaine Baron. However, it has been observed that depression and inactivity tend to aggravate the symptoms of pathology since in the body everything is connected. One must remain active and feel useful to hope for an improvement of one’s condition! ”
Obviously, if you work hard (handling, work on a construction site or off-peak hours …), a professional retraining may be necessary.
I am fibromyalgic, how do I get an adjustment of my working conditions?
In order to benefit from working conditions, it is necessary to first create a file and send it to the Departmental House of Persons with Disabilities (or MDPH, ex-Cotorep) of your department. This file is to be withdrawn at the town hall (to the social service CCAS) or to download on the Internet, on the site of the Public Service .
“To prevent your file from getting lost, photocopy it and send it by registered letter with acknowledgment of receipt, advises Ghyslaine Baron. It can be quite complicated to complete this file: if you need help, do not hesitate to get closer to a patient association. ”
The file is examined by the Committee on the Rights and Autonomy of Persons with Disabilities (CDAPH). “On average, we receive a response within 6 months. But in the Paris region, we can wait two and a half years … ”
Second step: an appointment with the occupational physician. “Get the answer from the MDPH, advises Ghyslaine Baron. Some occupational physicians are “fibrosceptic”: they do not believe in the existence of the disease, which they consider a “good women thing”. With the document, you will have more weight to enforce your rights. ”
What facilities can I hope for professionally?
- The introduction of therapeutic part-time (TPT)
- Physical fitting of the workstation by an occupational therapist
- A reclassification to a position more adapted to the situation of the handicapped worker
- Tailored work schedules
- Recognition of the Quality of Disabled Worker (RQTH), which allows access to jobs reserved for the disabled and retraining courses.
My employer does not want to hear about my illness, what can I do?
If fibromyalgia has been officially recognized by the WHO since 1992, some employers (and even some doctors!) Remain “fibrosceptic”.
“If you are confronted with a sensitive situation where you do not recognize your pathology, turn to a patient association, or to the Healthcare Info Service network that can support you. Do not stay alone! ”