13 posts from March, 2018

Is there a medical gender gap? The not-so-brief history of sexism in medicine

Posted March 27th, 2018 by

As Women’s History Month comes to a close, take a look at the gender gap in health care and how the centuries-old notion of “hysteria” may still taint women’s experiences today.

History of “hysteria”

Turns out, there’s nearly 4,000 years worth of evidence that people believed women’s illnesses stemmed from the uterus or sexual issues.

  • An Egyptian papyrus dating from about 1900 B.C.E. includes recipes for medicines to coax a ‘wandering uterus’ back to its proper place in the body.
  • The ancient Greek philosopher Plato described the uterus as an animal, which roamed inside women’s bodies, causing symptoms as it moved.
  • In the Middle Ages, many believed in humoural medicine, which linked so-called “hysterical symptoms” to the retention of “sexual fluid” in women.
  • During the late 1800s, belief and scientific interest in hysteria reached a fever pitch. French neurologist Jean-Martin Charcot proposed that hysteria was a nerve disease similar to multiple sclerosis and not unique to women. Sigmund Freud argued that hysteria was rooted in “unconscious conflicts” or embarrassment, which converted into bodily symptoms. He called this “conversion hysteria.”

In the early 1900s, hysteria got lumped under the broad category of “neurosis” and the term gradually fell out of medical use but the concept still lingered in broader culture, according to the British Science Museum.

Present day sexism

Writer Maya Dusenbery, who has rheumatoid arthritis, makes the case that sexism still haunts modern medicine in a new book called Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.

Here are some key stats and dates she cites:

  • Three-quarters of the estimated 50 million Americans with autoimmune diseases are women; patients with autoimmune diseases see an average of four doctors over four years before they receive the correct diagnosis, and nearly half report being labeled “chronic complainers” during their search (see our recent report on the diagnosis “lag time” for PatientsLikeMe members with various conditions)
  • Researchers understand far less about women’s biology because of a scientific gender gap. Up until 1993, the National Institutes of Health wasn’t required to track how many women were included in the research it funded with federal taxpayer dollars. Women (particularly those of childbearing age) were often excluded from clinical trials because of “a paternalistic concern about the risks to them and their future offspring” and because “researchers found it easier to study only men” — and even research on animals used (cheaper) male mice.
  • In addition to the research gap, there’s also still a “trust gap” in medicine, Dusenbery says. “While the term ‘hysteria’ has fallen by the wayside, the concept has remained alive and well,” she says, noting that other terms that have taken its place include: Briquet’s syndrome, somatization, conversion disorder, psychosomatic, psychogenic, and functional symptoms. About 70 percent of those with “medically unexplained symptoms” (today’s popular phrase that often implies “somatized emotional distress”) are women.

Some patients are raising their voices about these gaps. Documentary filmmaker Jennifer Brea, who has chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME), addresses the trust gap in her recent film Unrest and her TED Talk, “What happens when you have a disease doctors can’t diagnose.” And some conditions that are far more common among female patients, such as lupus, are finally getting more attention from researchers.

But Dusenbery wonders how many countless women have fallen through the cracks of these gaps in the system. “The harm done by medicine’s gender bias is difficult to quantify but staggering to consider.”

Have you experienced gender bias in your medical treatment? Join PatientsLikeMe today to connect with 392,150 women living with health conditions.

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Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship

Posted March 21st, 2018 by

What’s it like dating and starting a relationship when one of you has a chronic condition? Just ask our blog partners Karl and Angela Robb, who’ve been together for 22 years and married for 21 years. Karl has been living with young-onset Parkinson’s disease (PD) for more than 30 years. He and Angela are the couple behind the PD blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and authors of two books. Here’s their take on dating and relationships.

From Karl’s perspective…

Imagine dating in the early dawn of the internet along with a diagnosis of a neurological disorder. As if I didn’t have enough obstacles in my life, now I had to explain to my dates that I had early-onset Parkinson’s disease. Now, I came with a “warning label.” The challenges of dating, connecting, and finding someone who could look beyond my illness would take a miracle — or so I thought.

Admittedly, in my late 20s and showing signs of Parkinson’s disease (mild shaking, involuntary movement, stiffness, gait issues, and mild speech impairment), I didn’t see myself as a gem, but I still felt that I could be a loving and compatible mate. I knew that finding a partner willing to love and marry someone diagnosed with a supposed progressive, degenerative chronic illness wouldn’t be simple – this person would need to have incredible compassion, unimaginable courage, and beauty beyond compare.

I met wonderful women throughout my dating days, but many had their own issues or just couldn’t deal with my illness, or me. After a while, you realize your shortcomings and build up your own confidence. I wasn’t at fault for being ill and I wasn’t looking for someone to feel sorry for me.

I needed someone who could look beyond my symptoms and see my drive, my spirit, and my sense of humor. I needed, Angela.

I had tried conventional dating but was drawn to online dating, which gave me the opportunity to focus on personality, wit, and character, and not worry as much about symptoms that might deter from a positive first impression. I devised a series of 20 Questions and through AOL Instant Messenger (IM) discussions; I was able to see whether we had enough in common to actually meet in-person.

I met Angela by pure luck or destiny. I came across her username and started a conversation about her name choice. We started with intermittent emails that led up to nightly IM exchanges. Following weeks of discussions, we began talking on the phone and ultimately meeting after three weeks. Our professional lives and geographical distance delayed our meeting in person.

When Angela and I finally met for the very first time, it was like meeting an old friend. I can’t remember any date that felt the same.

After a few weeks of our online courtship, I disclosed my ailment to Angela, unsure of how she would react. Happily, and true to her nature, she seemed unaffected when I dropped the bomb.

Now, we have been married for almost 22 years. Angela remains my best friend, my partner in every way, and the person I want to be around most. I am so fortunate, blessed, and lucky – and I know it!

From Angela’s perspective…

When I met Karl, I really had no intention of meeting the love of my life – I was 24. Our first week, we sent emails to each other and played 20 Questions via Instant Messenger (thanks, AOL!). Those questions and answers gave me a perspective into the person who was on the other side. He was funny, intelligent, and caring.

Karl revealed his diagnosis to me via telephone. I thought that Parkinson’s was a disease that only older people got. I spent the next hour asking numerous questions about Parkinson’s and how Karl lived with his condition.

I can honestly say that my first reaction was of surprise that someone who was 28 years old would have Parkinson’s. My next thought was to learn all I could about Parkinson’s.

I did some online searches and consulted a leader of an online Parkinson’s support group. Even though it’s been 23 years since we spoke, I still remember his sage advice: “Don’t get involved with this man with Parkinson’s, unless you are absolutely sure you can live with the unpredictability of this chronic condition.”

I thought about his advice and realized that I wasn’t about to give up a relationship with my soulmate because he had a chronic condition! I committed myself to him and our relationship. I realized that everybody has something that we are living with – none of us are immune from having challenges in our lives. I figured that if Karl could live with my personal challenges, and me, I could live with him, and his challenges!

What has worked for us…

It has been over 22 years since we’ve dated, so we are far from experts, and everyone’s relationship is different. But here are a few important issues that we feel everyone should discuss openly, when they are meeting and developing a relationship with someone – especially if a person in the relationship has a chronic condition:

  • Are you prepared to have open and honest communication? This is the cornerstone of any relationship. It’s imperative that the people in the relationship be honest and truthful with one another. If you can’t do this, you really need to take a hard look at yourself and your possible relationship. Can you communicate your emotions to each other without fear?
  • Are you prepared to trust one another? It cannot be understated how important trust is in a relationship. Trust penetrates all levels of a relationship: physical, mental, emotional, spiritual, fiscal, decision-making, healthcare choices, and more.
  • Can you truly love without conditions? Unconditional love means loving someone no matter what happens – loving him or her through the good and the hard times. Can you give your love when your loved one may be incapable of speaking, showing, or demonstrating their love due to the impact of illness?
  • Are you willing to be flexible and adapt? Flexibility in coping with a chronic condition is a must! Being rigid and unbending in your daily life can make living with the ups and downs of a chronic condition even more difficult. Adaptation requires always being on the lookout for choices, options and new approaches, with an open mind.
  • Can you listen without judgment? Listening is an important relationship skill that needs constant attention. It’s not easy, doesn’t come naturally, and requires development. Listening means being open and waiting for your loved one to get his or her entire message out without interrupting. Listening is important even when it’s hard to hear what the other person has to say.

Finally, you have to be confident and love yourself, no matter what the challenge, in order to love someone else. Be patient with yourself and your potential partner!

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