WANT TO MAKE FRIENDS AND CONNECT WITH OTHER WOMEN JUST LIKE YOU? JOIN THE ETHEL CIRCLE TODAY!
Oh no!
It looks like you aren't logged in to the Ethel community. Log in to get the best user experience, save your favorite articles and quotes, and follow our authors.
Don't have an Online Account? Subscribe here
Subscribe

They Gave My Mother Two Years. She Had Other Plans

How my mom taught me the key to standing up to doctors.

Comment Icon
illustration of woman standing up to doctor sitting at desk
Harry Haysom
Comment Icon

At my mother’s funeral, my father took the microphone, pulled out his shirt-pocket notebook and started sharing vivid details about my mother’s 14-year battle with ovarian cancer. He was an aerospace engineer and, as my mother’s fiercest advocate, he had taken a lot of notes.

“She knew something was wrong,” he explained. “But they told her it was her weight. The pains in her stomach. They ignored her, but she knew.” Yes, she knew something was very wrong.

Turns out, she had ovarian cancer.

My mother was overweight. In fact, clinically obese. She dealt with depression and was a self-proclaimed underachiever. That is, until it came time to fight for her life.

“She was finally diagnosed at stage 4," my father continued. “Her doctor gave her two years to live. And you know what she told him?” He took an extra-long pause to compose himself. Virtually everyone at the funeral already knew my mother’s response:

“You can’t tell me how long I have to live. You don’t know. I’ll decide that.”

And she did. My mother took her two-year death sentence and turned it into 14 of the best years of her life, teaching me, her only daughter, a lot in the process. Like not to wait for a fear-inducing diagnosis to get fearless about life. And to stand up to doctors.

Recently, I was diagnosed with meralgia paresthetica, a sensory nerve disorder that causes tingling, numbness and burning pain. I’d wake up to the feeling of electric shocks running through my thigh and had extreme sensitivity to the lightest of touch, including my bedsheets. My doctor told me to lose weight, wear loose things and wait it out.

“Weight? Just wait?” I demanded. “There’s got to be more to it than that.” Then I added a “Not acceptable. Do better.”

While not my most graceful moment, it did lead to an excellent referral to a pain-management specialist, where multiple solutions were discussed and implemented. Weight loss was never the focus.

According to a 2023 Time article, “Weight Bias: Is a Problem in Health Care. Here’s What Doctors Can Do," "even doctors who specialize in clinical management of obesity showed very strong weight bias and used words like ‘lazy, stupid, and worthless’ to describe fat patients.”

I always think of those behaviors as a thing of the past, part of my mother’s generation, not mine. But the article goes on to cite more recent studies showing that “higher-weight individuals also experience shorter appointment times, less comprehensive exams, [and] fewer referrals for specialists and imaging.”

My mother valued being in a supportive community with ovarian cancer specialists and survivors. She learned about patient rights and new cancer research. As she kept defying the odds, she became a source of inspiration for others braving cancer.

She knew that survival statistics for stage 4 ovarian cancer weren’t in her favor. But something my oldest brother said to her got her thinking about survival rates in a whole new way: “We are all going to die,” he said flatly.

And that truth set her on a path of doubling down on life. She joined a poetry group, took acting classes and followed her own advice she would give other survivors: “Go out and reach out."

Guided by my mother’s tenacity I, too, have joined online health communities and found them particularly useful when navigating meralgia paresthetica during the pandemic.

A 2021 research review titled “Online Communities as a Driver of Patient Empowerment published in the Journal of Medical Internet Research states that “80% of internet users ... looked for health-related issues, and 18% had gone online to find peers with similar health concerns.”

The review referred to online communities as “complementary health care resources” and underscored their role in changing “how people manage their care process, as patients are able to seek guidance, experiences, and support from peers.”

Decades before, when I was in my 40s, I faced a health decision that had me reaching out to strangers by phone. After three sonograms, no one could be sure what they were seeing around my right ovary. Surgery was deemed the only option.

My gynecologist said, “Consider yourself lucky. You can have a hysterectomy and never go through what your mother did. No ovaries. No ovarian cancer.”

The oncologist scheduled to do my surgery called the hysterectomy a “preventive no-brainer.”

Both doctors seemed annoyed when I decided to do my own research. But I did it anyway. I spoke to women who had risk-reducing surgeries such as prophylactic mastectomies. Most had multiple women in their families with breast cancer. That wasn’t my situation.

Yes, my mother died of ovarian cancer, but both my grandmother and aunt were cancer-free. I had also tested negative for the gene mutation that makes ovarian cancer more likely.

Ultimately, it was my endocrinologist who told me about the supracervical hysterectomy procedure. I could have my uterus removed, which I didn’t need anyway, but keep the rest. Unless, of course, cancer was present. Which it wasn’t.

It turned out to be a large benign degenerating fibroid. Additional perspectives from credible sources had enhanced my sense of being in control of my own medical destiny.

My mother had my father, a copious notetaker and question asker. While my husband rarely joins me for medical appointments, he was involved in hysterectomy-related decisions. Having another person listening in can make all the difference.

Patient advocacy and self-advocacy take practice, and resources are available to provide a solid foundation. As an example, the New York Times Well guide “Take Charge of Your Medical Care” shares best practices across a range of topics from “When You’re Healthy” to “Advocating for Others.”

Like my mother learned to do, I trust my instincts if I feel a second opinion is needed. I’m no longer afraid to say no to things that routinely happen in doctors’ offices. I don’t want to know my weight, for example. The numbers aren’t helpful. So, I make sure that’s understood before I step on a scale.

Or, when my last mammogram turned into a medical student-training session without my permission, I called a time-out. I’m all for on-the-job training, just not on-the-boob training.

My mother was 50 when she was diagnosed and 64 when she died. She went in and out of remission several times, growing clearer with, and closer to, her doctors. Suddenly here I am turning 63. During every medical appointment, I can feel her presence and her strength. Standing up for myself keeps getting easier.


Do you find it hard to stand up to your doctor? Let us know in the comments below.

Follow Article Topics: Health
Editor's Picks
This always brings her back to me.
, May 16, 2024
How I have tapped into its power and you can, too.
, May 16, 2024
What one mother says about what your kids need to know.
, May 16, 2024