Researchers finding new ways to help those with invisible disabilities

By Tony Poland, LegalMatters Staff • Researchers are continually discovering new ways to diagnose and treat so-called “invisible disabilities,” giving new hope to long-term disability (LTD) claimants, says Ontario disability insurance lawyer Courtney Mulqueen.

“Diagnosis is integral to treatment and I am constantly dealing with the issue of objective versus subjective medical evidence when disability insurance claims are assessed,” says Mulqueen, principal lawyer of Mulqueen Disability Law Professional Corporation. “Claims for chronic pain and mental health problems can be extremely difficult to prove so each new discovery that helps us better understand, detect or treat these issues is appreciated.”

She tells LegalMattersCanada.ca that many of her clients are frustrated with the lack of diagnostic tools available to them in their quest to find treatment.

“I have had people tell me they went for an MRI hoping the results would at last detect a problem because even they were starting to question whether what was ailing them was all in their heads,” Mulqueen says. “It is so disheartening that they would want an MRI to reveal an issue so they could at least know what they were dealing with.

Pain may be subjective but it is real

“For many people, the pain might be subjective but it is still very real,” she adds. “It is frustrating to deal with an issue that cannot be definitively diagnosed.”

More and more, researchers are finding new ways to identify ailments that have so far been difficult to diagnose, says Mulqueen. 

She says she is encouraged by a newly reported discovery that uses gut bacteria and artificial intelligence (AI) to diagnose complex regional pain syndrome (CRPS).

According to the report, McGill University researchers, in collaboration with those in Israel and Ireland, “have developed technology that can detect patterns in gut bacteria to identify complex regional pain syndrome (CRPS) with remarkable accuracy, potentially transforming how CRPS is diagnosed and treated.”

“CRPS remains challenging to treat, with patients often experiencing prolonged suffering before receiving appropriate care,” said senior author Dr. Amir Minerbi.

It is estimated that up to 2.1 million people suffer from CRPS worldwide. In Canada, it is believed it affects more than 9,000 annually. It typically develops in a limb after surgery or an injury. It can result in severe, persistent pain that is often far worse than the initial injury.

Nerve endings become hyperactive

“[The] pain is excruciating, way more than you would expect,” Dr. Javier Webar, a pain specialist who treats patients with CRPS, told CBC News. “The nerve endings that are responsible for carrying the pain information from everywhere in your body become hyperactive.”

One man told CBC that after a year of suffering constant pain he was finally diagnosed with CRPS in 2019 and has been on disability since, spending most of his time at home.

“This disease has sucked me basically to the point where I am tired all the time, that I am fighting pain every day,” he told the news agency. “It just sucks the energy out of me.”

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Others have reported that because CRPS is not fully understood it took visits to multiple doctors before receiving a diagnosis.

Mulqueen says invisible disability claims can be extremely difficult to prove and trying to get a diagnosis can be taxing both physically and emotionally.

“You need a doctor’s support for these claims,” she says. “And even if a doctor diagnoses you with chronic pain, that finding can be viewed as ambiguous. An insurance company could argue that the diagnosis is subjective and not definitive.

‘Credibility is such a big issue’

“Credibility is such a big issue. Even doctors examining some of these patients may find it difficult to determine what is actually happening with an invisible disability,” Mulqueen adds. “Is this person malingering? Is it all in their head? Are they exaggerating the pain?”

She says doctors may also feel pressure from insurers who are skeptical of the claims.

“Not having a diagnostic tool for some of these issues makes it difficult on all sides,” Mulqueen says. “Then, of course, there is not only some question about what you have but how do you treat it?”

People with invisible disabilities may also be forced to endure a battery of tests such as MRIs, CT scans and X-rays that ultimately yield no definitive results, she says.

Mulqueen says recent strides in medical research, along with the growing acceptance of more invisible disabilities, is encouraging.

“It wasn’t too long ago that many doctors were skeptical that fibromyalgia was a real condition,” she says. “However, now it is recognized as a disability in Canada.

Fibromyalgia is a long-term condition that involves widespread musculoskeletal pain, fatigue, sleep disturbances, and cognitive difficulties. There is no known cure, but Mulqueen says doctors have a much better understanding of the condition because of ongoing medical research.

“Science has made significant strides in numerous areas which are already having a positive impact on many lives,” she says. “Take for example pharmacogenomics, which combines the science of genetics and the study of drugs to determine how people react to medication.”

Huge step forward

Mulqueen calls it a huge step forward because it essentially allows a person to know if the medication they have been prescribed is likely to improve their condition or cause side effects.

“Drugs interact with your body in ways that we may not realize until it is too late,” she explains. “Certain medications can be potentially addictive or, in some cases, make someone’s condition worse.”

Also noteworthy, says Mulqueen, is how artificial intelligence has found growing applications in medicine. For instance, it has been reported that AI chatbots can be used to ease a critical shortage of human therapists, she says.

“While technology cannot replace human interaction, whether it is a psychiatrist, a psychologist or a social worker, it may be able to provide some help to those suffering from a mental health issue,” Mulqueen says. “People can wait months to see a mental health specialist so these chatbots may be able to bridge that gap.

“AI is opening new doors and new possibilities,” Mulqueen adds. “Whether it is chatbots that provide mental health support or a tool to help diagnose complex regional pain syndrome. Every new stride brings hope to those suffering with invisible disabilities.”