The burden of “invisible disability”
Doctors treating multiple sclerosis focus on the signs of the disease, which they assess with a neurological exam, MRI, and other tools of the trade. Medications largely target these signs, such as inflammatory flare-ups in the brain that show up as lesions, in an attempt to limit tissue damage in the brain and spinal cord, and reduce the risk of long-term disability.
Symptoms, on the other hand, are what a person with MS experiences. Symptoms, such as pain and fatigue, are subjective. They are “invisible” – they can’t be seen by an outside observer. So a person must report the presence and severity of these symptoms to a doctor for them to be treated.
A new study has looked at the relative importance of different MS symptoms with respect to how they impact a person’s sense of health and well-being (Green and colleagues. Mult Scler J Exp Transl Clin 2017;3:2055217317728301). Researchers asked a large group of people (1,865 individuals, most of whom has relapsing-remitting MS) to rate their own health. The average score was moderate to good on the scale used. As you might expect, the number and severity of different MS symptoms determined how well a person felt.
The symptoms that had the greatest impact on a person’s sense of health were pain, walking ability, and fatigue. So two of the three most important symptoms to people with MS – pain and fatigue – were “invisible”.
To put things into perspective, studies have shown that most people with MS suffer from some kind of pain (Foley and colleagues. Pain 2013;154:632-642). The most common pain syndromes were headache, nerve pain, back pain, and muscle spasms. An Australian study looked at chronic pain in people with MS over a 10-year period (Young and colleagues. Scand J Pain 2017;16:198-203). They found that many people try to tough it out as long as they can without pain medications – perhaps because they were afraid of side effects or addiction. But pain syndromes didn’t get better over time, and had a huge impact on people’s quality of life.
Green and colleagues concluded their study with the suggestion that “invisible disability” may be more important than physical disability when it comes to a person’s sense of health and well-being – which challenges the notion that physical disability should be the primary focus of MS research and treatment.
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