Some medical conditions are embarrassing for most sufferers. Haemorrhoids, erectile dysfunction and any kind of incontinence definitely fall into this category.
Other conditions that can be stigmatising include epilepsy, especially when first diagnosed in adolescence. In my experience, young adults with newly diagnosed type 1 diabetes may also go through a tricky period coming to terms with injecting themselves with insulin in school and in other social situations.
However one disease I had not associated with stigma until recently is asthma, primarily because no one I have treated with the illness had ever expressed feelings of embarrassment.
While it's clearly my fault for never having asked a patient with asthma about stigma, I'm grateful to the Asthma Society of Ireland for bringing it to my attention. Its Living with Asthma study, published last week, highlights the resilience and personal strength of people with asthma. However, the qualitative research from focus groups involving 38 people with asthma shows a population who live in fear of their condition getting worse. Tellingly, from a stigma perspective, Sharon Cosgrove, the society's chief executive, said people with asthma "are limiting their activity levels, giving up hobbies and withdrawing from social and family life because of their asthma. They are embarrassed about taking medication publicly; they are being teased and seen as lazy, overweight and inactive".
Preventable deaths
Asthma affects 470,000 people in the Republic; this is the fourth highest prevalence of asthma in the world. An estimated 75 per cent of hospital admissions for asthma are avoidable, and as many as 90 per cent of the deaths from asthma are preventable. Primarily a disease of the breathing tubes in the lungs, when an asthma attack begins these airways narrow and begin to fill with inflammatory products. The mainstay of treatment is inhalers: “preventers” designed to stabilise the airways in advance of an asthma trigger, and “relievers” which are taken as soon as symptoms begin. Indeed the highly visible nature of taking an inhaler is mentioned by the focus groups as a source of embarrassment for some.
Another interesting finding from the study is that because asthma is a relatively common illness, its very ubiquity makes those with the disease feel less individually important. They speak of a one-size-fits-all system of management by the health system, with a lack of emphasis on the need to pursue individual goals and outcomes.
Doctors have always been aware of the financial burden of asthma on patients who do not have a medical card. The problem becomes especially acute during a recession when a “squeezed middle” – those with an income above medical card eligibility limits – really struggle with the cost of medication and doctor visits. Many of my colleagues do not charge long-standing patients caught in this trap, but we all have stories of being told only after a series of unexpected hospital admissions of families who simply could not afford the more expensive preventer inhalers. Thinking about it now, could this well-meaning pro-bono gesture by doctors actually contribute to the stigma felt by some people with asthma?
The study also found a weak relationship between asthma severity and health-related quality of life. “ The findings of this study suggest that health and wellbeing are intrinsically linked but may not always coexist in equal measure . . . There was an acceptance that symptoms would exist and that medications were essential in the management of their asthma, but there was a general malaise regarding the success of medicinal based interventions in isolation,” the authors note.
The type of qualitative research published by the Asthma Society is all too rare in Ireland. Referencing real patient experiences, it allows us to see beyond the fixed parameters of pure medical metrics. It says to healthcare planners: this is what matters most to people with asthma; now can you please do something to address the issue?
mhouston@irishtimes.com muirishouston.com