Living with rheumatoid arthritis, especially when things are not going well - when medications need to be adjusted, or symptoms sorted - can be a full-time job travelling the width and breadth of the city and sometimes the region or province if there are no services where you live.
Diagnostic tests, which include lab work, x-rays, MRIs or CT scans and visits to your family doctor, rheumatologist, surgeons or other specialists eat away your time and energy. You might have to schedule in visits to an occupational therapist or physiotherapist. You might opt to support your treatment holistically so you may make appointments with a naturopath, chiropractor and/or massage therapist.
That's a lot of time travelling and sitting in waiting rooms before finally facing the person you are scheduled to meet. This type of schedule would tax the well and able-bodied, but imagine traversing this mine field of appointments when you are not well.
I'm reminded of the time when I was teaching full-time and going for gold shots (Myochrysine), back in the day when patients did not do their own injections for some RA medications. Each week, I would go to my family doctor and wait for my scheduled appointment, which was rarely on time. My doctor would inject me, then off I went. I was required to go for weekly lab work, which was also on a first come, first serve basis. Two appointments in a week that was already brimming over with work - lesson plans, marking, grocery shopping and meal preparation, exercise and sleep. Socializing? Who had the energy! I'd fall into bed, often before 9 pm, only to toss and turn and wake up tired, to do it over again.
Minimally disruptive medicine is a term used to address the reason why some patients discontinue their treatment protocols.
"One of the key aspects of minimally disruptive medicine is the need to become aware of the burden that our treatments cause on people’s lives." - Dr. Montori in Living with the "burden of treatment"
Patients are tired. They're often struggling to cope with a Marushcka doll-like stacking of symptoms and treatment plans, plus live their lives, which includes family, work, exercise and recreation. Doctors and other healthcare professionals may be oblivious of the toll that is placed upon patients with their many referrals, requests and recommendations. All done with the best of intentions - to treat the patient.
Patients generally want to do the right thing, but sometimes doing the right thing requires a fortitude that the patient simply doesn't have. Their illness has eroded the ability to be resilient, to keep up with their burden of care. That's such a great phrase, isn't it?
My recent bout of shingles reminds me how fortunate I am to be relatively free from the spin cycle of RA-related appointments. I am able to increase my resilience by practicing heart-based stress techniques, which generally keeps me out of the doctor's office.
Are you coping with a huge burden of care? How do you foresee Dr. Montori's vision "...to make healthcare primarily about the welfare of patients" taking shape in your treatment plan?