What are the main challenges faced by people living with arthritis or a chronic inflammatory disease?
Whether the person has osteoarthritis or inflammatory arthritis, the most difficult thing is grieving the loss of what we were like before the disease. We have to abandon certain activities that we greatly enjoyed and that sometimes defined us. People with these diseases have to ask for help, and this lack of independence affects them a great deal. The loss of self and independence is a major challenge.
Then they have to deal with the fatigue, one of the common symptoms along with the pain. Planning the day well is imperative. Learning their limits and how to save their energy for more demanding times of the day is key.
Finally, navigating work performance, family obligations and social relationships requires additional effort and adjustments are often required after a period of adaptation.
What specifically can caregivers, family and friends do?
They need to understand the disease and have empathy. The invisible and unpredictable nature of arthritis (the pain comes and goes) means that it is sometimes misunderstood and easy to forget. Those with the disease do not show their pain and are often afraid to ask for help. A spontaneous offer of help is thus very much appreciated.
They also need to understand that long-term planning of an activity or outing does not always work: since the pain varies from day-to-day, they have to be prepared to deal with the unexpected.
Given the random nature of symptoms and the length and intensity of attacks, it is very important for caregivers to take time for themselves to rest and recharge physically and psychologically, so that they are available for their loved one during these more difficult periods. Family tasks often need to be reviewed and restructured. It is best to discuss this during disease inactivity periods, so each person knows their role when an attack suddenly occurs.
Please note: people with these diseases have painful joints, so avoid squeezing them too tightly. Give them a gentle helping hand!
What services does the Arthritis Society offer?
Depending on the area, the Hand in Hand program provides information on the disease and support for families living with juvenile arthritis and for adults. We also have another section that focuses on prevention.
The Arthritis Society’s website, arthritis.ca, is full of all kinds of information and resources; it also features videoconferences on various subjects related to arthritis, as well as workshops and online courses. Various publications are also available for download. And for those who prefer, they can always reach us at our toll-free number: 1 800 321-1433.
And finally, for the past four years, we have held a Provincial Forum on Arthritis at which participants can attend many talks on various subjects, meet health professionals and participate in interactive workshops. The information provided and the dialogue with professionals as well as among participants foster better management of the disease.
These activities and services are accessible to both people with these diseases and to caregivers.