What If No One Believed You Were Sick?

What could be worse than feeling ill? If no one believed you were sick. It happened to these women

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What’s worse than feeling ill? Having no one believe that your condition exists. That’s the reality for many Canadian women living with a slew of diseases that the medical community is slow to recognize as legitimate. Could you be suffering from something serious that your physician has dismissed as “all in your head”? Read on for information that could change your life and your health.

Noelle Harris has learned to listen to her body, even when it means making sacrifices like cancelling coveted vacation plans. For an upbeat, self-confessed Type A person, it’s been a challenging realization that’s come after a long, hard battle with two chronic conditions that affect hundreds of thousands of Canadians: chronic fatigue syndrome (CFS) and fibromyalgia.

Harris’s story begins in 1986, when she developed mononucleosis, followed by bronchitis three months later, then pneumonia and a bad flu several months later. When Harris initially became sick, her doctor was suspicious. “There’s something wrong with you, but I don’t know what it is,” she told Harris.

But after her doctor read about the Epstein-Barr virus on a trip to Germany, she sent Harris for a blood test that revealed the presence of the virus, which has been implicated in some studies in the development of conditions like CFS. However, even though she received a formal diagnosis, she wasn’t treated for it. By 2007, crushing fatigue had set in, causing her to be so tired, she could no longer teach her kindergarten class. She left her job. She was 53.

Harris’s journey to a diagnosis is a common one among those who’ve found themselves suffering from ill-defined conditions like CFS, fibromyalgia, multiple chemical sensitivity (MCS) and Morgellons disease (think Joni Mitchell). Many sufferers – a disproportionate number of them women – are beset by symptoms like fatigue (in CFS), muscular pain, poor sleep and exhaustion (in fibromyalgia), an inability to tolerate certain chemicals of any kind (in MCS) and skin lesions and neurological symptoms (in Morgellons disease). Many are disabled, confined to their homes, with only a handful of doctors in Canada who will treat them.

Though it’s changing and many GPs are seeing more patients with these conditions, patients often still have their symptoms dismissed by doctors. They also face a shortage of specialists trained in these conditions and a lack of easy access to treatment options. And then there’s the belief among some that these types of conditions aren’t real or legitimate.

“There’s a phenomenal stigma not only for people who have the condition but also for physicians who work with them,” says Varda Burstyn, a writer and environmental health policy consultant based in Peterborough, ON, with expertise in MCS (a disorder in which a person becomes oversensitized to everyday chemicals and is made extremely sick by amounts that would have no effect on a healthy individual). She says the result is that “many people get told that they’re exaggerating, that it’s not real, that it’s something else – ‘Maybe it’s an allergy.’” And she says the fact that more women are diagnosed than men has contributed to slower recognition of these illnesses by the medical community. “There’s a gender bias,” she says. “There’s a whole literature on that.”

Educating the Educated About CFS

Dr. Eleanor Stein, a psychiatrist and clinical assistant professor in the department of psychiatry at the University of Calgary, has spent years making presentations and educating physicians about CFS. “Most family doctors aren’t very knowledgeable,” she concedes. However, she says their familiarity – and receptiveness – toward the condition is growing. “The big problem is with specialists, who usually don’t have long-standing relationships with their patients the way a GP does,” she says. As a result, they’re less likely to take them seriously.

Dr. Stein says the science is there. Last year, the US National Institutes of Health released a report on CFS, as did the US-based Agency for Healthcare Research and Quality in 2014 and the Institute of Medicine in 2015, which laid out, in very plain language, that CFS exists. “It’s not psychological; it’s biological,” says Dr. Stein.

Recently, the Canadian Institutes of Health funded a fellowship for fibromyalgia and CFS, which Dr. Stein says further illustrates that Canadian health authorities are recognizing both conditions. “Anyone who takes the time to read the literature comes on board because it’s so clear,” she says.

On the bright side, there are new treatment approaches that are lighting up the horizon. One focuses on neuroplasticity, which is about how the brain reshapes itself. Dr. Stein is currently exploring visualization techniques – in which a person imagines something other than the pain to block pain signals from being processed by the brain – with her patients. Over time, the pain centres can theoretically become smaller, with patients having fewer symptoms. “Pain signals don’t register because the brain is busy,” says Dr. Stein. “It’s a whole new tool kit.”

Understanding MCS

The approach to MCS is also changing, in large part due to Burstyn’s work in the area. The condition has been recognized as a disability requiring accommodation by the Ontario Human Rights Commission and Canadian Human Rights Commission. On the academic front, referral clinics funded by the Ministry of Health and Long-Term Care have been set up in both Ontario and Nova Scotia, while a Pediatric Environmental Health Specialty Unit has been established in Alberta.

Dr. Lynn Marshall, chair of the Ontario College of Family Physicians’ Environmental Health Committee and a staff physician at the Environmental Health Clinic at Women’s College Hospital in Toronto, says the clinic sees a lot of patients annually – most of them women. The waiting lists are long for clinics like hers, given that there are so few in Canada.

Her job is to review patients’ tests and bloodwork, looking for factors like heavy metals (depending on the patient’s exposure history) and making recommendations for care. (Often, people with MCS are advised to avoid trigger chemicals, such as odorous household cleansers, scented personal-care products and new cars.) She also counsels employers about return-to-work strategies to help ensure that employees can resume their jobs in an environment free of triggers to prevent breathing, skin and muscle reactions.

But she admits that much more awareness is needed before MCS is widely accepted and treated effectively. She says many physicians aren’t educated about it. “We are striving to increase physician awareness that it’s a real condition,” she says.

For sufferers like Wendy Kearley, a resident of New Glasgow, NS, who is largely confined to her home due to MCS, change can’t come soon enough. Kearley, who has extreme fatigue, breathing problems, chronic migraines, skin reactions and body aches, begged her GP about 16 years ago for a referral to the environmental clinic in her province. It was only four years ago, at the age of 61, that she was finally able to put a name to her disease. She has also been diagnosed with fibromyalgia and CFS.

“You mention it to your doctor and he says ‘I don’t smell anything,’” says Kearley, who has trouble visiting hospitals due to scented products worn by staff and the presence of chemical cleaners. She says her current physician is uneducated about MCS, but if she draws up ways to minimize her chemical exposure, he accommodates this but only with a letter from the specialty clinic. “Even though my doctor is accommodating, it’s challenging to get him to do that,” she says.

Morgellons: The Enigma

Morgellons came to prominence last year when it was revealed that folk singer Joni Mitchell was a sufferer. This condition, in which sufferers experience skin-crawling sensations, neurological symptoms and fatigue, followed by open sores with tiny coloured fibres emerging from the skin, is controversial.

The US Centers for Disease Control and Prevention (CDC) found that it has “no infectious cause and no evidence of an environmental link.” The CDC concluded that patients with Morgellons disease be treated for psychiatric conditions, calling it “delusional parasitosis.” Other experts have dismissed the fibres found in patients’ wounds as bits of clothing that have become entangled in the skin.

These positions outrage Marianne Middelveen, a Calgary-based microbiologist and scientific advisory panel member at the US-based Charles E. Holman Morgellons Disease Foundation. She is part of a collaborative research team that studies skin samples from Morgellons sufferers, theorizing that a spirochetal infection – like ones seen in cattle – might be to blame. Performing standard histological stains, they made a startling – and potentially groundbreaking – discovery, lending credence to sufferers’ theories about what’s wrong with them.

“In human tissue, we found that fibres were keratin or collagen, both produced by the body,” says Middelveen. “They are not textile fibres; they are human biofibres produced by human skin cells.”

As for the delusions theory? “At present, we have studied 25 Morgellons patients and have detected spirochetes in all 25,” says Middelveen, who hopes that the CDC will commission a study that will yield similar findings. Spirochetal infection is a bacterial infection that can be spread by insects, such as ticks. Treatment includes antibiotics over long periods. “It takes a long time to treat it,” she says.

Intense Suffering

Stan Skoumal wishes Morgellons would be recognized by the medical community rather than having it written off as a psychiatric issue. A former employee in the psychiatric wing at Chilliwack General Hospital in BC with degrees in criminology and social work, he first started having symptoms more than 10 years ago. Instead of itching, he developed a wound in the middle of his back that he couldn’t even reach. Short-term memory loss, balance issues and partial paralysis in one leg followed.

But when he visited a dermatologist for a diagnosis, he was given a prescription for a psychotropic medication and a 10-minute lecture on the “wonders of the mind,” recalls Skoumal, who left somewhat depressed and angry. Skoumal did not fill his prescription. Instead, he founded a support group for Morgellons sufferers, the Morgellons Society of Canada. The site, which has thousands of members, has yielded some desperate tales. Skoumal recalls one woman who feared losing custody of her daughters if she visited a doctor with Morgellons symptoms. Another was confined to a psychiatric ward against her will.

“I don’t know a single person where Morgellons didn’t bring them to their knees,” says Skoumal. He credits himself with turning his life around, the lack of medical care notwithstanding. “Through an organic diet, exercise and vitamins, I became healthier,” he says. His symptoms are now more or less under control.

Elaine Husband, a former Calgary city councillor, had a better experience with Morgellons: She found a sympathetic doctor, met Middelveen – who found spirochetes in her blood – and received antibiotics to treat her condition. “She saved my life,” she says. “I had to use a walker. Now I have only a few days a month where I feel bad.”

Both Husband and Middelveen say the CDC and Health Canada need to acknowledge that this is a legitimate condition and hope a national strategy will be developed. But things move slowly – something that all parties acknowledge. “Medical science is like that,” says Middelveen. “It takes a long time to turn around.”

Harris, who suffers from CFS and fibromyalgia, is doing better, having found a doctor who listened and prescribed a medication that helps her sleep. She also goes for massages, does yoga and stretches daily to manage symptoms. She looks forward to the day when fibromyalgia will be formally recognized as an illness, but she knows that will take a while. “I think you need to go to a positive place with this,” she says. “I don’t let it stop me.”

How to Get Help

Suspecting that you have a condition like chronic fatigue syndrome (CFS), fibromyalgia, multiple chemical sensitivity (MCS) or Morgellons can be daunting, but getting a diagnosis is key. Start by researching symptoms at reputable sites:

CFS: mefmaction.com, fm-cfs.ca

Fibromyalgia: cwhn.ca/node/40784

Multiple chemical sensitivity: womenscollegehospital.ca/programs-and-services/environmental-health-clinic

Morgellons: morgellons.ca, thecehf.org/what-is-morgellons.html

Find a doctor who is willing to help. Support groups can direct you to doctors who practise in a given area – something that the doctors may not wish to advertise.

Or get your physician to call a clinic that specializes in your condition. “We are willing to respond to emails from doctors everywhere,” says Dr. Lynn Marshall, a staff physician at the Environmental Health Clinic at Women’s College Hospital in Toronto. “Email our office assistant and we can send information or links to reliable information online.”

Related:
The Truth About Lyme Disease
What Don’t You Tell Your Doctor?
10 Questions to Ask Your Doctor

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