Hope through advocacy: Louise’s story

The following is an excerpt from a speech given by Louise Bergeron at the Lupus Canada/CaNIOS Annual Meeting in Halifax on June 10, 2006. Louise is a member of the CAPA Steering Committee and a Board Member of Arthrite Montreal Arthritis.

I was diagnosed with Systemic Lupus Erythmatosus in 2000 at the age 39. I was working full time, married and my two children were 3 and 7 years old. I was in constant pain. I had migraines every day, low-grade fevers and the worst part was the fatigue. I tried to convince myself that it was a temporary state of affairs and that soon I would be back to my old self again. That did not happen. It is now 2006 and I am not my old self again … maybe it’s for the better.

During the first few years following the diagnosis I was not living well with Lupus. I was overwhelmed, depressed and unable to cope. I was in total denial and kept thinking that Lupus was a temporary situation much like a cold. The problem is, Lupus is a chronic disease and, despite the medications, I was not improving.

I finally found relief through a local Montreal arthritis support group called Arthritis West Island Self Help. It helped to talk to other people who had different types of arthritis and to learn from their experience. Even though we had different forms of arthritis, we all suffered much the same symptoms of pain, fatigue, and emotional turmoil. The support group helped me come to terms with my Lupus. Before joining I was always trying to go back to the life I knew before Lupus. With their encouragement I realized I had to move forward.

Self-advocacy is one of the toughest jobs we have as patients living with chronic disease and dealing with the healthcare system. It is also one of the most important. I became an active member of my medical team. I asked questions and became knowledgeable about my disease. I talked to my pharmacist about the new medications I was prescribed, how to take them and the secondary effects associated with them. When I heard about medical interventions that could help me, I would discuss it with my doctor. Actually, I would personally like to see everyone who has been diagnosed with Lupus to be referred to an *intervention program so they can be educated, given support and monitored on a consistent basis. Because I see many specialists, I record their reports to keep my family physician current about my treatments. Advocacy is fighting for your health so you can live optimally and have a good quality of life.

Advocating for a better quality of life for myself and people with arthritis has helped me to live well with Lupus. Instead of focusing on the negative things that Lupus has done to my life I am able to focus in on what it has brought.

Lupus has brought me to advocacy. My family’s experience with arthritis has brought my voice to the struggle of raising awareness of arthritis, it’s many forms and it’s impact. My mother has osteoarthritis and osteoporosis. My father has Fibromyalgia and osteoarthritis. My daughter suffered from a strep induced reactive inflammatory arthritis at the age 5. My sister has recently been diagnosed with Scleroderma. These diseases have taken their toll. Doing something about it has empowered me rather than beating me down. I think of it as a personal crusade. I am hoping for an end of this legacy that is being handed down from generation to generation.

• The intervention program Louise alludes to is a rehabilitation initiative that is offered at the Constance Lethbridge Rehabilitation Centre in Montreal. Health professionals work in teams to enable the person with arthritis to function as optimally as possible. The health professionals involved in Louise’s treatments included a physiotherapist, social worker, occupational therapist, orthopedist, dietician and recreational or leisure therapist.