Coping with the isolation of Fibromyalgia
PHOTO COURTESY CHANTAL BERGERON
The executive committee of AFSFC-VS met via Zoom on Tuesday night, May 12 on international Fibromyalgia/CFS awareness day, to talk strategy for upcoming meetings and events that will continue remotely to make sure people get the support they need, even with social distancing rules in place.
Fibromyalgia and Chronic Fatigue Syndrome (CFS), sometimes referred to as hidden diseases, can cause a huge sense of isolation in sufferers, now more than ever with COVID-19 quarantine and social distancing protocols in place. May 12 was international Fibromyalgia/CFS Awareness Day, underlined on what this year would have been the 200th birthday of Florence Nightingale.
History of awareness
Nightingale, who is most famous as the woman who founded modern nursing and who created the Nightingale Training School in 1860, did so despite being largely bedridden for the latter half of her life with the chronic pain and fatigue symptoms that are now understood to be associated with Fibromyalgia.
In honour of her, the date was chosen and for 28 years has been marked internationally to bring awareness and understanding for an enormously misunderstood condition. In this spirit, the members of the not-for-profit Association de fibromyalgie et du syndrome de fatigue chronique de Vaudreuil-Soulanges (AFSFC-VS) are going above and beyond to help those who suffer from this disease in the greater Vaudreuil-Soulanges region.
Just what are these syndromes?
It isn’t entirely known what causes Fibromyalgia and Chronic Fatigue Syndrome. Symptoms can include debilitating fatigue, pain in the muscles, joints or skin, severe or chronic headaches, mental fog or difficulty concentrating or remembering, and more. They can affect men, women, and children but most commonly strike women between the ages of 35 and 50. Around a million Canadians are affected.
According to Chantal Bergeron of the AFSFC-VS, the pain and other symptoms can change day by day or hour by hour, making it difficult for sufferers to cope with work and daily life when they don’t know whether they’ll be in pain or even able to get out of bed from one day to the next.
“In some ways what’s worse than the pain, is the doubt,” says Bergeron. “It’s people who don’t understand who make you feel like the problem is all in your head because there’s nothing on the outside that you can see.” Since there is no cure for these conditions all that can currently be done is to treat in an effort to alleviate symptoms and to build understanding so that people don’t have to feel like they are suffering alone.
Building understanding in challenging times
“We’re going all out for awareness, and we’re all wearing symbolic blue today,” said Bergeron on May 12. AFSFC-VS offers many services to help people cope with Fibromyalgia and CFS, and to come together with others who are in the same situation. The COVID-19 pandemic has thrown off their regular face-to-face activities but they are working around it and in some ways even reaching more people.
“We had to move our meetings to Zoom but actually that has allowed us to reach people who are even further away, and helped people meet more often who otherwise might have missed meetings because they are in too much pain or because the drive is too long.”
Adapted Zoom activities that are taking place are: Monday – Creative journal, Tuesday – Group Therapy (in French only), Wednesday – Beginners drawing class, Thursday – Adapted yoga. All activities are open to members and membership costs just $25 per year. This Sunday, May 17 there will also be an online forum with Santé Cannabis to discuss therapies that can aid with symptoms to improve quality of life.
For now, the sessions are in French though the leaders are all bilingual.
“Our goal is to increase the number of English-speaking members by September so that we can offer classes in both languages,” says Bergeron.
There is a great deal of information on coping with the conditions on their website (www.afsfc-vs.org/) and all are welcome to reach out to them online or by phone at (450) 218-7722 for more information or to join.