How I came to understand the challenges of healthcare for women
When I accompanied my wife to appointments, I noticed a difference
When I met my wife, Jill, I had a different view of healthcare than I do now. Since she learned she was gene positive with Huntington’s disease in 2018, I’ve been forced to look at healthcare through Jill’s eyes.
We’ve gone to countless doctor appointments together, where I’ve witnessed firsthand the challenges she faces in having her concerns taken seriously.
The first time I saw her prepare for an appointment, I noticed her carefully writing down her symptoms, along with answers to potential follow-up questions the doctor might ask. I assumed that was because of her sensory issues or white coat syndrome, which can raise her stress in a doctor’s office. I figured it was a way to keep herself on track during the visit, but Jill explained that her meticulous preparation served a different purpose altogether.
“Sometimes I feel like I have to defend what I share about my symptoms,” she told me.
Despite her years of experience in the medical field and her ability to articulate her experiences clearly, she’s often encountered pushback from doctors. At times her thoughts about her own body were dismissed as overreactions or, worse, deemed not real.
A gender divide
Jill revealed that she sometimes felt this dismissal was related to her gender, which was eye-opening for me. At her request, I began accompanying her to appointments, and the differences in how she was treated compared with my own medical experiences became glaringly apparent.
It’s important to note that Jill doesn’t believe all medical professionals are dismissive. In fact, she’s quick to point out that many doctors provide excellent, compassionate care. However, she firmly believes that the medical field as a whole should shift toward a more patient-centered approach.
She explained that no two people are alike, and they should be treated as individuals.
“I cried the first time someone sat down and listened to me in the office,” Jill said. “Even with my sensory issues and my white coat syndrome on full display, I didn’t feel like I had to prove something was wrong with me. The best part was that I didn’t have to explain my sensory issues with touch or defend the fact that my physical reactions weren’t because I thought they weren’t nice. She [the doctor] just sat down and listened. And at the end, she asked me how she could help me be more comfortable.”
In all of my years of visiting medical professionals, I’ve never left a doctor’s office feeling like that. So when Jill shared her story with me, I cried with her. I knew what she had faced, but how could someone so logical feel like they weren’t valued?
I asked her what we could do to make her more comfortable during her doctor appointments. Jill had a lot of ideas, but she said that they start with finding a good healthcare provider. When she realized that she deserved more, she started reading reviews. She looks for reviews that use the word “listen.” It’s a simple concept, but when checking out healthcare providers, she was surprised by how many patient complaints there are about not feeling heard or listened to, many of them from women.
The second part of Jill’s plan is to interview the person before seeing them as a patient. She wants someone who understands sensory issues.
Jill has also decided to approach her healthcare as a woman and paying customer who deserves to be treated as an individual with individual needs. Jill wants a healthcare provider to understand that what works for a man won’t always work for her.
While Jill may have concerns that are different from other women’s, I know she isn’t the only woman who’s voiced concerns with a healthcare system they feel wasn’t designed for them. The stories I’ve heard from other women in Jill’s circle show that their experiences are real and valid and demonstrate a need for change.
I asked Jill what she thinks can be the first step to improve the system.
“Treat me like a human being while listening to me,” she said. “It’s not rocket science.”
As Jill’s Huntington’s progresses, we know we’ll be interacting with several specialists and healthcare providers. Her request to me is simple: When she can no longer write down her own information, I’ll do it for her. More importantly, I’ll ensure her voice is heard and her concerns aren’t dismissed.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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