Would you like to receive the very best medical care available? Who wouldn’t?! When dealing with any chronic illness, it is vital to your health that you become an informed patient. There are 4 basic areas to focus on when preparing to be your own medical advocate. If you have someone to help you with this, even better. Research, Records, Medical Appointments, Action. This post will deal with Research, the first thing you need to do. I will follow-up in my next post with Records, Appointments and Action.
You’d research before buying a house, or a new car, right? Even a smartphone! What about your own health? If anything deserves your time and effort, it’s your health. Your quality of life depends on it.
Read the most recent books published on your condition. Learn which online resources are legit, and which are health marketing (a website that is selling a product). Here is an excellent guide to finding what you need online, and learning what to watch out for. Also www.cochranelibrary.com/ is a trusted resource for impartial evidence-based reviews of treatments.
Don’t assume your doctor is an expert on your condition (especially a General Practitioner); they have not put in the time and research on your condition as you most likely have. They know about a large number of conditions, but may not have extensive and current knowledge on all of them. You may need to ask for a referral for a specialist, and you may need to ask more than once. Follow-up until you get that appointment. (In Canada, you may wait longer than a year). I have had a referral get “lost” and then had to wait even longer. I’ve had to write letters, emails, faxes, and contact the owner of a health clinic personally in order to get an appointment. It has made me very angry but even more determined.
Know your condition inside and out, read books and valid research, talk to other patients (www.patientslikeme.com is a great resource), know about up to date treatments and be prepared to ask for them. If you think that you will automatically be given the best treatment without asking, you may be sorely disappointed. Sometimes physicians are reluctant to order tests unless they are certain you have whatever the test is for. Sometimes physicians have a preference for a certain medication and that’s what they prescribe, even though a different one may be more appropriate for you.
In my experience, nothing has come easily and I have had to advocate loudly and persistently (which was once way outside my comfort zone). It is exhausting, especially when you don’t feel well. When you’ve done your research and you know what you need, the frustration of not being taken seriously can help energize you to fight for your rights.
I’m interested to hear from other people about their experiences, especially people in other countries. Please share a comment below!