“I Am My Own Best Asset”: Learning to Be Your Own Advocate When Living with a Rare Disease or Chronic Illness

The Danger of Stereotypes

There is still a huge stereotype that women are prone to “hysteria.” This leads to a general distrust in women’s self-reported symptoms. Physicians consciously or unconsciously tend to minimize these self-reported experiences. It’s even worse when the symptoms the woman is experiencing are subjective (for instance fatigue).

There is harm done when a patient does not trust their doctor. The same harm is done when a doctor does not trust the patient to accurately describe the feelings they are experiencing.

Far too often, women are turned away- their pain attributed to anxiety, stress, or depression. Later down the line, a severe diagnosis is uncovered. The timeframe between these two experiences is often filled with ongoing symptoms, feelings of anxiety, and progression of disease.

Turned Away

It took 12 days full of sweats, chills, and uncontrollable facial swelling, two prescriptions of Benadryl, one steroid shot, an urgent care visit, an ER visit, lots of money, and two trips to her primary care physician for Jenna Birch to finally receive her angioedema diagnosis. Her primary care physician commended her for advocating for herself, coming back to the doctors, and for being so aware and in tune with her own body and its stimuli. Turned away again and again as “allergies,” Birch was lucky her throat and tongue didn’t swell as a result of her condition as it can be life-threatening.

This wasn’t the first time Birch was dismissed by medical professionals when she knew something was wrong. She has Fibromyalgia, Interstitial Cystitis, Pulmonary Hypertension, and IBS. Her Fibromyalgia diagnosis only came about because she researched her symptoms herself and insisted she be tested for that specific disease.

But, this time something irked her more than normal about her experience. She felt that she had been brushed off because she was a female.

The thing is, every time she went to see a doctor about her swelling and pain she told them about the one thing that had changed in her daily routine since her symptoms started- birth control. Time and time again she was dismissed. Turns out the pill had caused her angioedema. It’s a rare reaction that can occur with estrogen spikes, but rare or not- it was her diagnosis. Despite advocating for herself and showing each doctor the pill package, she was turned away again and again.

Danielle, who as a pregnant black woman knew her risks were higher for dying during childbirth, brought a detailed birth plan to her doctor and asked to discuss her concerns. Her doctor dismissed her immediately saying “That’s my job, you don’t have to worry about this.”

Alexandria, asked to her doctor to examine a lump she had found in her breast. She was dismissed because she was “too young and healthy” to have cancer. Turns out, she had triple positive breast cancer. Thankfully, she is now in remission as a result of treatment. But who knows where she would be had she not insisted she was seen.

Azmia was told she was probably just depressed when she went in to see her doctor after feeling poorly. Later it was discovered she had stage 4 endometriosis which necessitated two surgeries (two, because the first was done incorrectly).

Unfortunately these stories are not uncommon. In fact, they are especially common for the female patient. Part of the solution is quite simply, that physicians need to listen better to their patients. The other part of it, is that doctors are human. They don’t see rare diseases often so they don’t suspect them. As the patient living with your symptoms every single day be confident that you know what is different about your body and what needs to be addressed. Demand to be heard.

Why it Happens

In addition to the aforementioned stereotypes, one of the problems is, in general, “women’s health issues” are of lower priority for researchers. Likewise, study results typically aren’t analyzed utilizing sex as an evaluation criteria.

It can be a matter of life or death, and the statistics are quite scary.

The following are some of the illnesses are more common in females-

  • Fibromyalgia- 9 times as likely
  • Chronic Fatigue Syndrome- 4 times as likely
  • IBS- 3 times as likely
  • Migraines- 3 times as likely

However the average time for diagnosis for Fibromyalgia for instance is 5 years. A Chronic Fatigue Syndrome diagnosis also frequently takes years. An Endometriosis diagnosis averages 7.5 years.

Being Your Own Advocate

Jen Caudle is a professor, a family physician, and a strong advocate for patients advocating for themselves. She actually encourages patients to push back against their physician if they’re not feeling heard, and to not be afraid to “fire” their doctor if they’re being dismissed.

“Just like any relationship, with a doctor-patient relationship, it’s possible to stay too long.” 

She also encourages patients to research their condition on their own (from reputable sources of course).

Claudia Birch says, not only was her own research essential to finally receiving her Fibromyalgia and Angioedema diagnosis, but that it was the best thing she could have ever done for herself.

“After 8 years of chronic pain… I am finally beginning to realize that I am my own best asset.”

You can read more about this take on being your own advocate here.

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