Do you have the kind of relationship with your doctor that's marked by open communication, honesty and a good flow of information? If so, that's great! Both you and your doctor deserve pats on the back for cultivating this sort of relationship. Maybe you feel this is partially true for you. Or not at all? Either way, you may relate to this story about what one patient, Dave, wishes his doctors knew:
When I turned 40 I started experiencing aches, pains and numbness in my back and legs. My eyesight blurred. My heart rate went haywire, I had shortness of breath, and my diaphragm became partially paralyzed. I remember thinking, "This must be what it feels like to get old!"
I knew it was more than old age. I repeatedly visited my doctor who listened and examined me but I could tell he was perplexed. Off he'd send me to specialists, and I'd return to him, still without answers.
The inability to find the common thread throughout my symptoms that could lead to an answer—a diagnosis—disappointed both my doctor and me. Then he said it. He asked: "Did you ever consider that maybe this is all in your head?" Let's just say I was "red-face mad." I'd been loyal to him for years. And this is how he treated me? How dare he suggest I was making this up!
After calming down and thinking it through, I took a look at the facts. My primary care doctor isn't a "Specialist of Everything." Each time I visited him, he listened, examined me, referred me to qualified specialists, and tried to keep track of what was going on. He was doing his part.
So I decided to remain persistent and informed. I talked to others, read and learned. I listened to my body. I knew my symptoms were connected. During this time of discovery and even since the great mystery of my symptoms has been solved, here's what I wish my doctor knew:
- Listen to me: Don't just hear. Don't think of your response or consult Google on your phone when I'm talking. My non-verbal cues matter as much as what I'm saying.
- If you don't know, admit it. I appreciate honesty. Just don't make me think it's "all in my head." And if you do think that, please don't ever say it. To me or anyone else.
- Communicate with my other doctors. Share what you know or already tried. Perhaps even talk to them. It's critical for my care.
- Tell me why. Don't hand me an order to do blood work, explain what you're looking for. If I don't take the test, please hold me accountable.
- Follow up. After a test, I want to hear if the results were good, bad or indifferent. Also, tell me about next steps. Speaking of which, returns my calls and emails.
- Speak to me in plain language. Medical lingo and jargon is perplexing.
- Hold me accountable. When I fail to listen, be transparent or follow your advice, respectfully call me out on it.
- Remember, I'm busy too. I have a job and family. In the limited time we have together, I don't want to feel like you're rushing off to the next appointment.
- Let me know if you're running behind. I may need to reschedule. If I show up late, you can reschedule me.
As for my own situation, I was lucky to happen upon two co-workers who suffered from multiple sclerosis and suggested I had similar symptoms. I read everything I could find and was terrified to face the possibility of an unpredictable, potentially disabling disease that disrupts the flow of information between the brain and body.
I presented my doctor with the possibility and he referred me to a neurologist. "Here we go again," I thought. But my suspicion was confirmed: I had MS. Those two letters changed my life forever but oddly, I was pleased. Not to have MS, but to finally have answers.
There's no easy test for MS, so the disease is hard to diagnose. There's no cure either, but fortunately, my MS is under control. Medications help. Attitude is even more important. So is advocating for yourself as a patient and staying informed. And of course, finding a doctor who will be your partner, appreciate your intuition and your own knowledge is critical.
And that's what I've done. Since being diagnosed, I've found a primary care doctor who truly sees keeping me healthy as a team effort. We work toward solutions, staying ahead of symptoms and anticipating complications. Together we focus on keeping me healthy and in the best position to address health issues as they arise.