Annette Mckinnon
McKinnon and I live in Toronto. When I began to have symptoms that affected my life I went to see my GP doctor. He told me I was a normal healthy mom. It took me two years to get a diagnosis of rheumatoid arthritis working on my own. During that time my joints were heavily damaged.
Since that occurred 40 years ago and information is much easier to find now I hope that my situation is now less common, though I still see stories of doctors not believing patients.
Having a chronic disease is like having a part time job. The work involved in dealing with my health takes as much time as dealing with the effects of the arthritis. I felt guilty as a mom for not having more time for my children in their teens when they needed me, and for keeping our family from having a full extended family life and a social life. With rheumatoid arthritis many of us need expensive medications; many medications have side effects or long term risks, so I have to balance current quality of life with potential future problems. The joint damage has meant I needed surgeries with recovery time, and care from my spouse.
It frequently happens that people with chronic autoimmune disease develop other health problems that are even harder to detect, and harder to find treatment for. I’ve had to learn to speak ‘medical’ which is almost a new language and is hard to acquire. It would help if health care professionals used plain language on every occasion and wrote down the names of diagnoses or technical terms that the average person does not know.
Mariève Bonin – ‘Pearls of Wisdom’
We all know how short the time we spend talking to health care providers is in comparison to our whole lives, so I suggest that providers of care take every opportunity to encourage patients and caregivers. A few words of praise over a small accomplishment can cause patients to double their efforts to do more on their own to improve their health.
