Ginger Nord likes to look people in the eye as she walks down the street in her rural Indiana town. it makes her feel like she is in control. With two diseases affecting her nerves, muscles, and joints, she needs to keep an eye on the ground to avoid tripping over tiny cracks on the sidewalk.
Nord is now 52 years old and it has been two decades since she was diagnosed with Charcot-Marie-Tooth Disease (CMT), a hereditary condition that causes peripheral nerve damage and weakens arm and leg muscles. She always thought she was clumsy. Nord also has Ehlers-Danlos syndrome, a connective tissue disorder that makes her joints overly flexible and painful.
Because of her complaints, Nord wears leg supports and at times has burning, numbness and chronic pain in her back, knees and hips. Post-traumatic stress disorder (PTSD) due to multiple childhood trauma disrupts your sleep and worsens physical symptoms.
The CDC estimates that nearly 40 million women in the United States – and more than 16 million rural residents – suffer from chronic pain that lasts for more than six months or that frequently restricts living or work activities.
Finding healthcare providers who understand women’s pain and take it seriously can be difficult enough. In rural America, this can be nearly impossible.
Imbalance between the sexes
According to Dr. Kimberly Templeton, a professor of orthopedic surgery at the University of Kansas and a member of the HealthyWomen’s Women’s Health Advisory Council, women are more likely to have problems that lead to chronic pain.
Fibromyalgia, osteoarthritis, rheumatoid arthritis, and lupus are all conditions that disproportionately affect women and can cause chronic pain associated with depression, which is also more common in women.
Studies also show gender-specific differences in the perception and expression of pain – women experience pain more often and with greater intensity
“It is unknown if this is a physiological or anatomical problem, or problems with the effects of estrogen on tissues or the increased inflammatory response in women,” Templeton wrote in an email exchange. “”[It] is probably a combination of all of that. “
Finding the causes of some types of chronic pain, such as: B. Autoimmune Diseases, can be difficult and sometimes take years. Common symptoms like fatigue or muscle pain can have a variety of causes and are often attributed to emotional problems in women.
Angela Gregory, a health advisor who helps people manage chronic pain through diet and fitness, was diagnosed with fibromyalgia 26 years ago when she was 19. She describes it as the flu.
“You feel like you have weights on all your limbs,” said Gregory.
Doctors have questioned Gregory’s diagnosis many times, but all have ultimately concluded that it is correct.
Access to Care in Rural America
There are no neurologists in Nord’s small town, only “local country doctors” who deal with minor complaints. She had to go to Fort Wayne – an hour away – when she fell and hit her head, which ultimately led to her diagnosis of CMT. The clinic that confirmed CMT with a DNA test was two and a half hours away in Indianapolis.
“With increasing knowledge about gender and gender differences in pain, we need to ensure that health professionals, including those in rural communities, are aware of these differences,” Templeton said. “This is where telemedicine can be useful.”
Telehealth can make up for isolation, which can make depression and anxiety worse.
“Telehealth can help women, especially during a pandemic and especially in rural communities, relieve pain by allowing their health professionals to continue access,” Templeton said.
Telemedicine only works if you can access it, however, and 19 million Americans – including a quarter of the rural population and a third of the tribal population – still lack the broadband internet they need.
Access to telemedicine for rural communities has become more difficult recently as some insurers waived the associated consumer costs on October 1.
Doctors can’t always help
Nord no longer bothered to see doctors for their CMT. She has a hard time driving to Fort Wayne, and most of the doctors only offer her pain medication, which Nord avoids due to a family history of addiction. She also finds that some doctors don’t necessarily understand the disease.
“As patients, we will tell them this is happening and they will say that it has nothing to do with Charcot-Marie-Tooth.” But in her online community, Nord finds people with similar problems.
“We actually know more about this disease than the doctors because we live with it every day,” said Nord.
Gregory hasn’t seen a doctor for fibromyalgia in years. In fact, she doesn’t have a doctor at all. She says her doctors only offer to prescribe drugs that didn’t work or made her feel worse.
So she can do it on her own.
“I’ve learned to listen to my body,” said Gregory. “I feel I know myself best.”
According to Templeton, it’s not uncommon for women to avoid grooming. “The social gender-specific expectation is that women are the educators and take care of everyone else before themselves.”
Delaying care, however, can worsen the conditions that cause chronic pain.
“We need to help women prioritize their own health and help them develop more self-efficacy, to take the time to seek care and to make sure they are getting the care they need and are looking for as this is can lead to better results overall. “
Listen to your body
Templeton advocates education. “Learn what is causing your pain and understand that there are things you can do to improve it.”
Gregory coaches others in tactics to use to manage their own pain, particularly by adjusting the way you think.
“As soon as you find that you have more control than you originally thought, everything starts to come together.”
She recommends tracking symptoms, diet, and physical activity to identify patterns and triggers. What works for Gregory may not work for others. What works one day may not work the next.
“It’s really easy to get frustrated and throw your hands up and be done,” said Gregory. This can make the pain worse. “The hardest [thing] is finding the balance and sticking to it until you figure out what works for you. And don’t give up. “