The team surveyed 123 outpatients with chronic migraine (CM) and 123 with episodic migraine (EM) ages 18 to 65 using the Stigma Scale for Chronic Illness (SSCI), a recently developed 24-item instrument that allows for the quantitative assessment of stigma in persons with neurological disorders and comparisons across disorders, the Migraine Disability Scale (MIDAS), and the SF-12, a quality of life measure.
“The SSCI was markedly different in EM vs. CM (41.6±14.84 vs. 54.05±20.15, (p<0.001),” Dr. Park noted, “while patients with chronic neurologic diseases; stroke, epilepsy, multiple sclerosis, Alzheimer’s, ALS and Parkinson’s disease had a mean score of 42.7±19.7.” In migraine, stigma correlated with disability as measured by MIDAS, and negatively with the physical and mental components of quality of life, measured by SF-12, although the correlations were not strong. “We were surprised not only by the degree of stigmatization experienced by the individuals with migraine, but also by how little we could explain by disability and quality of life.
This article caught my eye for obvious reasons. I have faced that stigma… usually in the form of ‘if you do such and such they would not be so bad’… in other words, they might understand migraines, but not the impairment involved in chronic migraines. It is the same with FMS… someone may understand muscle pain but not chronic pain plus the other problematic symptoms. And that stigma is frustrating and isolating. They state it can lead to depression and anxiety and they are right… because we feel judged, misunderstood and alone. It also makes me feel angry… very angry. Maybe because I’ve been through all this before with Fibromyalgia which carries with it a hefty stigma on its own, causing me to minimize its effects to everyone, including doctors and not mentioning it to employers or casual friends. I would do the same with migraines if I could… but they are a great deal harder to hide. Whatever. We should not have to suffer in silence. The reality is that this stigma can drastically effect someone’s life, including their ability to get or maintain employment. The stigma at work I find is particularly brutal.