Life is comprised of a set of relationships. Bosses, spouses, delivery people, colleagues, even the woman at the butcher’s counter at your grocery store and the bank security guard who recognizes you by now. Close or not, you have relationships with more people than you think. How is it that one of the most intimate relationships you will ever have is with someone who will never invite you over? Or know your middle name? Or how easy it is to cheat you at Monopoly?
I’m talking about your provider. Specifically, the doctor you see to help you manage your condition. Without a doubt, the relationships you have with providers throughout your life, especially at the point of diagnosis, will be some of the most important of your life. Fair or unfair, they will have a huge impact on how well you live. Getting that relationship right is vital to living the best life you can. If you find yourself out of step with the provider you see for your condition, you could end up struggling unnecessarily.
At the heart of it, relationships all come with a power dynamic.
A healthy relationship is balanced. Each party offers their expertise and decisions are shared based on all input. For a long time, the average patient-provider relationship has been unbalanced. The provider tells the patient what they should do, and the patient does it, often without question.
Does that sound right? Would you accept that from a spouse? Or, say, someone who is going to remodel your bathroom? Wouldn’t you ask for a cost breakdown or whether their materials or techniques might cause issues? If there was a more suitable solution for your particular house? Of course you would.
So, why not ask those questions of your provider?
A lot of reasons. If we have just been diagnosed, we are scared and it is hard to process a ton of information. If we are getting along fine, with just a few twinges here and there, the status quo may seem more attractive than changing. It may not occur to us that there are other treatment options that make us less tired, less dizzy, cough less. In those cases, we have accepted that some discomfort is worth the management of the condition. And that’s fine, but it doesn’t mean you shouldn’t question that every once in a while.
There’s also the intimidation factor. Many of us accept that the provider is the expert, and they are. On the disease. But who is a better expert on your body than you? No one.
You may feel that your contribution to your own care isn’t as important as the provider’s, but I assure you it is. We are not textbooks, and the provider cannot know – and shouldn’t be expected to know — how we feel unless we tell them.
Forgive my bluntness, but we need to get past that. The stakes are too high for us not to. Although not as common as it should be, there is a trend toward higher levels of patient participation – in clinical research, health IT, hospital practices, and clinical practice.
What to do when you can’t change “doctor shop”
Now, sometimes insurance, location, and other factors limit our selection. If you are not in a position to doctor shop until you find someone who will work with you, these phrases are your friends:
No.
I don’t want to do that.
What are my options?
Is there a better way for me?
Could we try something else?
Why? (Do you want me to do/take that)
The benefits of conversations
One, or a combination, of the above should at least start a conversation. A conversation, by definition requiring the participation of at least two people, starts to equalize patient-provider roles. The benefits are vast:
Conversations over instructions allow you a measure of control over your own care instead of ceding it to your provider.
Conversations start to answer the whys. You may be able to better problem-solve for your condition. (This does not mean not calling your provider or going to the hospital if you need to.)
Conversations allow you to address some of the more bothersome nuisance issues that always accompany chronic and autoimmune conditions.
Conversations allow you to discuss what’s going on in your life that may be affecting your condition and that the provider may not know about otherwise. Stress affects all conditions. Lack of sleep, divorce, being a parental caretaker. Any of these can have a negative impact on your condition.
It may also help your provider to share some of the burden of the decision. (I can’t say because I have never been on the provider side of the equation.)
Changing your approach to the patient-provider relationship is not going to be easy. In some cases, it may call for a temporary change in personality. But the bottom line is, patients and providers are most successful when we work as a team. The provider offers their expertise on the condition and the patient offers their expertise on their own body. Both of those are needed for the best, most effective care. The best way to do that is to be in a balanced relationship with the other other man (or woman).
This blog post was originally written for the Wellacopia blog and was published there on February 26, 2020.