October 27, 2015 — Blog Post
Graduating From Patient School: Health Literacy & Care Transitions
When I started having concerns about my health I was in my 30s. Aside from childhood ailments and the births of my children, I had no experience with the healthcare system.
Trapped in revolving door healthcare
This picture sums up the interactions I had with my primary care doctor. I would go to my appointment and talk about symptoms. After he dismissed them, and before I had another chance to open my mouth, I would be out the door. Finally he said “Take 12 aspirins a day and come back in 3 months”. This was so ineffective that after a month I found a new doctor.
The new doctor prescribed NSAIDs (nonsteroidal anti-inflammatory drugs) instead. That was a problem itself since NSAIDS are particularly hard on the stomach.
So I had more symptoms – the fatigue, weight loss, joint pain and swelling I started with, and now also nausea and gastrointestinal problems. With both doctors it seemed they were going to carry on with their chosen treatments and there was no end point.
It was really difficult to plan and carry through a change while I was exhausted and sick, dealing with preteen kids, a part-time job and a husband changing his profession. When you have so much trouble just dealing with your daily life it is hard to be proactive and make good decisions. However after sticking with these two doctors for a year and a half, I made an appointment to see an orthopedic surgeon in hope of finding an answer.
He had one. “Send the lady for a blood test” he told his eager students. And my life changed again with a diagnosis of rheumatoid arthritis (RA), a chronic autoimmune disease with no cure.
That shocked me. After the depression of the diagnosis lifted a little I was left with boundless anxiety which I kept to myself mostly. I did exactly what the rheumatologist advised medically and tried to pick up the pieces of my life.
Having no support was a problem. My husband would not have been able to cope with all my worries, and no doctor I ever met has enough time to discuss every question. The only support group I found then consisted of elderly ladies who met in the daytime: impossible for a young working mom.
Information started to be easier to find once I had a computer, and my level of health literacy began to grow. I joined an online support group and learned from peers and from online searches. Though I knew more, it was still not affecting my health.
The turning point came with an intersection of two parts of the story. My trusted physio had convinced me to persist with one very easy exercise which I made part of my routine morning and night. At the same time, I enrolled in a clinical trial of a drug that ultimately failed, but the thorough attention that was paid to every aspect of my health decreased my anxiety.
The moment that made such a difference to me was a simple comment by a specialist I had not seen before, who during a routine trial assessment told me I had “good muscle tone in my abs.”
This amazed me. After 15 years with sore feet and hands and very little exercise, making an effort to do one small exercise actually made a difference. The fact that the doctor was a specialist who saw many people with RA gave her comment even more impact.
For her it was a mere observation, but for me this information was new motivation. I redoubled my efforts to learn and to do more. I started learning to do Arthro-Pilates (modified to fit my abilities) and began to be more active.
I transitioned from a naive and trusting patient at the beginning of my illness, to a very health literate and active advocate for the voice of the patient to be included in healthcare decisions.
Through a combination of volunteerism, social media, continuous learning, and persistence I would say that my life has totally changed for the better. The job change I had to make after the diagnosis gave me a more stimulating and less physically taxing job which prepared me very well for a move into health advocacy.
That’s the story of my transition. I am no longer the naive and trusting patient who was caught in the revolving door. Now I feel empowered and I am part of the team working to change healthcare.