More “Stigma”, More Migraine?
A recent study published in Neurology took a look at how stigma may affect migraine disabilty.
I put “stigma” in quotations in the title, not because it’s not real, but because sometimes it’s defined in different ways. This study used a very helpful measure, using a tool called the Migraine-Related Stigma (MiRS) questionnaire. MiRS divides stigma into two categories:
- “feeling that others viewed migraine as being used for secondary gain” – for example, someone thinks you’re using migraine as an excuse to get out of work, or to make people sorry for you.
- “feeling that others were minimizing disease burden” – for example, someone says “it’s just a headache – deal with it”.
These are very helpful categories, and most of us know exactly what they’re talking about from personal experience.
Researchers have noticed that, in the case of many diseases, stigma seems to actually affect outcomes. In other words, maybe your treatment won’t help as much if people around you are minimizing your symptoms. So – is the same true for migraine?
You would think that there would be some corrolation – for example, the person who has more “headache days” in a month is likely to experience more stigma. And you would be right – that is exactly what happens.
But one of the more interesting findings in this study was this: even if you account for that, even if you take away the factors of more or less headache days, or even the symptoms and severity of the attacks, stigma still seems to increase disability (or disability leads to more stigma). If you experience stigma, you tend to be more disabled (even between migraine attacks), and have an overall poorer quality of life.
In fact, researchers pointed this out: People with fewer than 5 headaches a month, but who often or very often experienced stigma, had a worse quality of life than those who had over 25 headaches a month and yet never experienced stigma!
One other interesting note: Researchers did not see a major difference between men and women regarding stigma – both experienced it to about the same degree.
Now of course there are a lot of numbers we’re playing with here (and you can check out the study for yourself here: Migraine-Related Stigma and Its Relationship to Disability, Interictal Burden, and Quality of Life), so there could be a number of reasons why one thing is causing another thing or not.
However, there does seem to be a general picture emerging:
- Migraine patients still often experience stigma from others (about 1/3 said “often” or “very often”)
- That environment of stigma may be increasing migraine disability
In the end, you are you – you are not the other person, and you have a limited ability to control what they do or say. Yes, we do need to speak out when we can to help others understand and be more informed (while listenening to other points of view as well). Advocates with websites like this one or those who have various media platforms are certainly helping get the word out.
And sometimes just recognizing the problem can help us think through it. There are times when we need to be aware that someone else is just not understanding, and that no one really knows how we feel.
Migraine is serious, and can have a long lasting impact on health and on your life in general. Let’s keep working together to make migraine stigma a thing of the past.
For another perspective on this study, check out: For people with migraine, feelings of stigma may impact disability, quality of life