Focus arEa 1: stigma - visiBlE & invisiBlE the impact of stigma on individuals and society Compared with cancer or heart disease, neurological and pain conditions are not widely recognised and understood by the general population. Negative attitudes towards people with these conditions include ignorance and fear about the disorders, and their causes and impact. This results in behaviours ranging from blatant expressions of reluctant to disclose their condition, or avoid certain activities. Rare conditions such as Guillain-Barré syndrome and ataxia-telangiectasia are unfamiliar to even most healthcare professionals. More common disorders such as epilepsy are well-known but widely misunderstood by the general public. Where symptoms are invisible, for example in many chronic pain disorders, patients can be made to feel that the condition is not accepted as genuine and disabling. Stigma can prevent people from seeking help quickly, because of possible negative social consequences9. If a patient delays seeking help, they cannot receive the best treatment and support, which might stabilise symptoms and prevent comorbid conditions such as depression, pain, and fatigue. For many conditions, earlier diagnosis and treatment aids a quicker return to independence and less reliance on health and social care services. Even for degenerative conditions such as Alzheimer’s disease, early diagnosis is cost-effective because treatment can help people to maintain independence and delay expensive interventions such as admission to nursing homes10,11. Stigma also results in an under-estimation of the true prevalence of some conditions by healthcare systems, payers and research funders11. This contributes to relatively modest funding of charities and patient advocacy groups for these conditions and a massive under-funding of research by governments. Brain disorders cost Europe twice as much as cancer, but cancer research receives twice as much public funding13.
Almost a third of people with chronic pain report that even their friends and family do not know what chronic pain is, or do not talk to them about it14
More than half of people with epilepsy feel stigmatised and 18% highly stigmatised15. Thirty percent never reveal their diagnosis16, often for fear of losing their job17.
Personal testimonies “When you have a better day and people see you walking on the street they say “well, it appears she’s healthy enough to take a walk, but not to work…”. That hurts, even after 10 times, even after 100 times. What people can’t see is the condition you’re in at home, how you need to rest after every effort you make, how many pills you have to take to get there. The worst thing is that you can’t see pain from the outside”. (Belgian patient with chronic pain)
“It took several years for doctors to believe me. I live in constant pain. They treated me as a hypochondriac. Therefore, I wasn’t getting my condition properly managed at the earliest stage and I was denied access to therapies for pain management… I feel I was denied a right to be informed about all the pain management options available so I could not make the best decisions for my condition. I feel I was denied my right to live with the least amount of pain possible.” (Slovenian patient with chronic pain)
“I can clearly remember on my 21st birthday arriving home from work and going to bed with a migraine rather than heading out to celebrate with friends... One person I was living with commented that she had never had a headache in her life and didn’t believe in headaches, that they were just in someone’s head… From then I found myself playing down the extent of my headaches in my working and social life for fear that others would also misunderstand and think I was exaggerating, looking for attention or to try and get out of something.” (Irish patient with migraine)