Men and women with PD share many symptoms and experiences — more in common than not. But gender makes a difference in health care. This has been well documented in heart disease. Multiple studies and surveys have demonstrated that women are less likely to get the aggressive treatment provided to men with the same cardiovascular symptoms. As a result of gender-based disparities in how heart disease is prevented and treated, more women than men have died each year from heart disease since 1984, and the gap between men and women’s survival continues to widen.*

While there is more than one reason for this distressing state of affairs, in my experience — and that of women I have known and loved — a primary one is that women and men use verbal communication very differently, with different results. The research of social scientists such as Deborah Tannen has fleshed out some of these differences. Women tend to use talk to build rapport and negotiate relationships, while men prefer to quickly get to the point or fix a problem. Women are more likely to use disclaimers when offering their thoughts, employing such expressions as “I hope you don’t mind if I say this, but…” Men are expected to express opinions with greater confidence. In light of these differences, it hardly seems surprising that gender may lead to unequal treatment experiences and outcomes.

You don’t have to be a woman or have PD to find it challenging to speak up for yourself in ways that are actually heard. But female PWPs may find that certain aspects of Parkinson’s disease are working specifically against them. Consider the voice-softening effects of PD. It happens to both men and women, and can be problematic for people of either sex. But consider that some research indicates that women tend to speak more softly than men in the first place, and you have a mix that makes it literally more difficult for doctors to hear what female patients have to say.

The “facial masking” of Parkinson’s, which causes the face to become less expressive, presents specific challenges for women, too. From earliest childhood, females are taught (by their parents, teachers, mentors, peers, the media and countless other influencers) that it’s important to smile; girls and women, more than boys and men, are expected to be and appear amicable, sensitive and empathic. When our facial expressions don’t meet those societal expectations, people may take offense or withdraw as friends without ever even realizing that they are reacting to something entirely out of our control.

A lesson I’ve tried hard to impart to my teenage daughter is that we’re all at least 75 percent responsible for how other people treat us. If they aren’t hearing what we’re trying to say, we need to look at what we’re doing to contribute to the outcome we don’t want, then change our own behavior to get closer to the outcome we do want. For women with PD, that means listening to ourselves, and observing whether those around us, including our doctors, are hearing and heeding what we’re saying. We must work on maintaining and strengthening the volume of our voices — work with a speech pathologist, or seek out one of the many videos or other tools designed for this. It is important, too, to prioritize what we have to say, and emphasize issues and items that are high on our list.

If you get tired at the doctor’s office — as so often happens — make sure to discuss important items up front, while your energy level is still good. Try using emphatic phrases such as:

• “This is key": This is a good way to introduce a symptom that has become problematic.

• “That was important for me to tell you, but this is also critical”: This will cue a doctor to listen more carefully.

• “This is what I really want you to hear”: If you’ve already asked a question or delivered a message but the doctor is not providing the information you need in response, use this phrase before repeating or rephrasing as concisely and accurately as you can.

• “I’d like to repeat what you told me earlier because we skimmed over it”: Doctors may be pressed for time, but a patient should never agree to finish a visit without a thorough understanding of what has been discussed.

You might feel fearful or lacking in confidence to use these phrases, or worry that the words are too direct. But there are countless benefits to be reaped. After all, whose health is this anyway? It’s ours! Find ways to say with conviction what you want others to hear.

If it makes you feel better, lead with this comment: “I’m going to be more direct for a few moments to be sure I’ve made clear what matters most to me.” Then use one of the phrases above or one of your own that clearly articulates your concerns.

Finally, remember that sometimes a relationship is simply not working and cannot be fixed, no matter how well you communicate. To quote from The Michael J. Fox Foundation’s patient-authored Guide for the Newly Diagnosed: “The most important element in your care is that you have as comfortable, open, and productive a relationship as possible with your care provider. In choosing a doctor, your major considerations should be how much the doctor knows, and how well the doctor listens. Remember, no two cases of Parkinson’s are alike. Having a doctor who understands this, and who listens to you, is crucial.” If you continually feel that your doctor doesn’t hear you, no matter how you adapt your communication style, it may be time to find a new doctor.


* Women’s Heart Foundation