I am attending a workshop titled, "Navigating The Healthcare System", put on by The Mary Pack Arthritis program in Vancouver British Columbia. It is located in a building that shares a treatment center for those living with the different forms of Arthritis, along with The Arthritis Society BC & Yukon branch. They offer several classes to help develop the crucial tools and skills that can last them a lifetime with this chronic illness. I speak from personal experience as I live with Rheumatoid Arthritis, Osteoarthritis and Fibromyalgia. I particularly like this teacher as he is a registered social worker, registered clinical counselor and also has osteoarthritis in his knees, so he gets it! To us patients, that is reassuring. He also works alongside my social worker who has been treating arthritis patients for 25 years.
An important thing to bring up about these classes is they are a crucial step into the process of accepting your illness. At them you can connect with professionals to help you and other patients, with as many worries and questions about what has just been dealt to them. It helps diminish the feelings of being alone when diagnosed with chronic illness. Engagement helps the information stick with the patients. Between the brain fog and the harsh reality of this disease, it's important to make sure the information sticks with the patient and for them to share their story to others who will not judge them as it can be a way of accepting our illness.
It is so common, but often patients rarely get a referral to the proper programs they need for their form(s) of arthritis or battle with insurance companies over disability coverage they desperately need. Patients are often left confused, don't know where to turn to nor who to trust in the big pharmaceutical world. Sometimes they can't even trust their own doctor. People don't understand Arthritis. Too young, not sick enough and patient concerns are not met because arthritis isn't taken as serious as it needs to be. Patients often hear, even from health care professionals and especially society:
Just learn to live with it. It's only Arthritis.
You're just getting old, don't worry about it, of course you are achy. Everyone get's Arthritis.
You are too young for that. You look totally fine. Why are you here? Or the infamous, "But you don't look sick?"
We want to be taken serious. We need to be taken serious for completely valid reasons. Your voice is important.
Can your physician meet your needs?
In Canada, especially BC, there is a severe lack of Rheumatologists which creates a backlog in the system, effecting it in numerous ways, like being able to choose a good doctor for your own specific needs. Remote locations have less access to proper healthcare . Do you feel you doctor takes time to meet with you or do you feel rushed? There are 85 Rheumatologists to over 7,000 Rheumatoid Arthritis patients in my province alone with fewer than 270 Rheumatologists in Canada and approximately 6 million Canadians with a form of Arthritis. Canada is still envied around the world as having an excellent healthcare system, but of course not without it's problems.
Are you able to open communication with them and ask appropriate questions? Can you ask them in depth questions and receive in depth answers? What is their degree of specialization and does it match your specific needs while keeping in mind every case is different. Make sure you are honest and thorough with your health, evading the truth isn't going to help. Don't hide things, keep it real. If you are in pain and still in pain, be real and tell them. Don't be afraid to challenge or raise your concerns about the treatment plan.
It is incredibly important to remember the way chronic pain from arthritis affects a patient. The brain is a powerful organ which can be targeted by some forms - anxiety and depression can be a severe symptom and side effect from medications. How much emotional display do you desire from your doctor? Are they willing to refer you to help? Do you feel comfortable enough to ask them for help?
It is ok to breakdown in front of your doctor. I have, in fact, I even made my own doctor tear up showing her the beginning steps of my advocacy on Breakfast television promoting the Walk for Arthritis. They are human too! I knew she was a good doctor for me when she lobbied for the proper treatment of biologics and long term disability, respecting me as a young single mother just diagnosed with Rheumatoid Arthritis. I could only imagine how that felt for her as a mother herself. She's met my son many times, always assured me it was ok he was tagging long with me, I had no other help. That to me is respect and a good doctor. She resonated with me. It's ok to bring a support person with you, especially if they can take notes. Unfortunately my son is only five, my arthritic hands still write better than him a this point.