You may be like I was. Too trusting.
In 2004, I found a golf-ball sized lump under the skin on my torso — just to the right of where my stomach is.
It really scared me …. so off I went to my family doctor who seemed perplexed, too. He sent me to a surgeon who removed that lump. It was no more of a hassle than having a tooth pulled, or getting stitches in your leg. Eight stitches later, home I went.
When I heard two weeks later that I had been diagnosed with a rare, aggressive and deadly form of lymphoma, I was completely blown away. Over the course of the next three months, I went from my very trusting, very reliant, relationship with my doctors, to my complete lack of distrust for the American healthcare system. Please note, that doesn’t say I distrust all the people who are part of it. No — it means that what I learned was that the system is set up to fail patients and it fails them every day.
It turns out that my diagnosis with a fatal form of lymphoma was, instead, a misdiagnosis. I had no cancer. Whatever I did have was gone — and it has never recurred. I have never had treatment. I have never seen another lump.
I went from being told I would be dead within months, to finding out I was as healthy as any other mid-50s age woman who has only been moderately “good” about preventive and healthy habits throughout her lifetime.
The hurdles to getting the right answers, the right treatment, and a longer, healthier life are many. Misdiagnosis is just one of them. Lack of diagnosis, bad treatment recommendations, errors in test result reporting, drug errors, patient safety including surgical errors, and of course, problems with insurance reimbursements or any other payment problems are all hurdles to getting good care.
My husband will tell you I have gone from being a Healthcare Pollyanna to the development of what we call my “cynical crust.”
As it turns out, however, that cynical crust serves me well. It makes me keep asking questions — always a good thing — and it helps me develop advice for those of you who read my blogs, columns, etc.
There will be times we have to trust — but we need to trust wisely. If we develop a sense of trust knowing what the possible problems are, then we know when it’s time to begin questioning our care.
We may not have those many years of medical school behind us, but we patients know our bodies better than anyone else does. That knowledge, combined with intuition and common sense, will help us overcome those healthcare hurdles that might otherwise prevent us from getting the care we need.