My husband, a physician, and I have four wonderful children – a son and three daughters. I look back over the past decade and wonder, “Why?” Why did my daughters contract Lyme disease and not my son or husband? Why was it so difficult to establish a diagnosis? Why are doctors specializing in treating patients with Lyme disease considered pariahs, while conventional doctors may not consider the diagnosis and often miss it? Why do insurance companies deny treatment for long-term Lyme disease? Why was it so difficult to get help from a profession that was supposed to help people?
I counsel and console other mothers going through similar situations – caring for children affected by Lyme disease and other chronic conditions – and they always ask how I managed to get through the ordeal. I managed because I am, and always will be, a mom. I did it for my children – they needed advocates when they couldn’t do it themselves. I had no other option. If not, I don’t know where my daughters would be today.
A wise woman once told me (when I felt at the end of my rope): “Don’t waste your energy being upset by the people who don’t ‘get it.’ They will never understand until those individuals experience something like you did.” Unfortunately, I have found this to be true, but it shouldn’t have to be this way. Doctors shouldn’t have to literally walk in a patient’s shoes to understand their despair, but many need to gain empathy and compassion, seemingly lost along the way.
If I could say one thing to the many doctors I have seen on my journey, it would be that they need to listen to their patients and their families. Don’t brush them off and discount their opinions, believing that the only correct answer is the physician’s. That “see a mental health professional” recommendation becomes indelibly stamped into the medical record and poisons the well. It biases future doctors and undermines patients’ integrity and self-confidence, or what little remains of it.
Get to know your patients before you pass judgment. Check their charts first and find out what they have been through. Ask them about prior medical encounters and experiences. Before you write off a patient, realize that test results aren’t always accurate and symptoms can be vexing; they don’t always comport to a readily discernible disorder.
I had lost count of the doctors who hadn’t checked my daughters’ records before they entered the exam room. Once, one of my daughters saw a gastroenterologist. He told her, “You have irritable bowel syndrome.” She calmly eyed him and said, “I don’t have a bowel” (she had had a colectomy), to which his response was, “May I ask why not?” The physician never offered an apology or explanation for his terrible miscue.
A great doctor once explained that patients who suffer are the real experts. I have met so many doctors brimming with knowledge gleaned from textbooks and research studies, but they ignored the plight of their patients. Isn’t it the ability to relate to patients’ subjective experiences and consider their notion of what ails them, as well as their fears of the disease, that is part of the “art” of medicine? I would rather a doctor be honest and tell me they are unsure what is going on and make a referral than pretend to have all the answers. Instead of subjecting my family to the pain and anguish of unmet promises and false hopes, I would respect that.
To all those doctors who have listened and been there for us, I want to say “thank you.” My daughters were so profoundly affected by Lyme disease and their exchanges with medical professionals – both positive and negative – that they decided to enter the medical profession. They are the bravest people I know; the doctors who listened to and helped them are our heroes!
Cheryl Lazarus is a retired teacher and social worker.
