My Behavior Change Project focuses on endometriosis, a menstrual disorder which few know about despite an estimated 1 in 10 women suffering from it. It is a chronic condition, and a leading cause of infertility (Endometriosis UK) . This project aims to tackle the idea that menstrual pain of any kind is ‘just your period’ and bring awareness to a much under represented disorder. The direct behavior this project aims at changing is getting those who experience menstrual distress to keep a Period Pain diary. I want women and others who menstruate to feel that their pain is valid and to have a better understanding of the pain they are in so they can get the help they need.
Too often menstrual pain is dismissed as ‘just your period’
Through puberty no one even mentions menstrual disorders. Girls are not told what is and is not a ‘normal’ amount of pain to be experiencing. This leads women and girls to internalize the social norm of ‘just your period’ and dismiss their own pain. Meaning they don’t seek and don’t get the help they need.
Why is this important?
Endometriosis is one of the most severe menstrual disorders. It occurs when endometrium tissue that grows inside the uterus also grows on the outside of the uterus (Seear 2009). It impacts on your physical, mental and social well being, and can be completely debilitating. It is also a leading cause of infertility, which is detrimental to many who want children.
But hardly anyone knows about it – including many who are suffering from it! Meaning there are many people suffering in silence.
I myself over Christmas had a doctor tell me about endometriosis and that I might have it (you cannot get an official diagnosis until you have a laparoscopy). This term I have seen the disorder severely impact my attendance at university and my ability to complete work to the standard I wish to. As someone who has been going to the doctors at regular intervals for severe menstrual pain since I started menstruating at age 12, I was shocked that it was only now at age 21 that a doctor mentioned this disorder to me.
Endometriosis is a chronic disorder,which can be completely debilitating. This disorder is also not uncommon. From my research I’ve gathered that an estimated 1 in 10 women suffer from endometriosis – that’s 76 million women around the globally (Seear, 2009)! This is the same estimate as it is for diabetes. So why is it you’ve likely heard of diabetes but not endometriosis?
There is an approximate 7.5 year diagnosis gap in endometriosis in the UK (Endometriosis UK). Meaning even those who are going to doctors with menstrual pain are not getting the help they need for potentially years.
Reasons for the diagnosis gap:
‘There is no medical consensus on the etiology of endometriosis, or on the most effective treatment.’(Denny, 2009)
Like many women’s health issues, endometriosis research is majorly underfunded and under researched. Because we do not have complete knowledge of menstrual disorders and because ‘amount of pain’ is subjective is hard for doctors exactly what you are suffering from.
I also belief a reason for the diagnosis gap is vague reports of symptoms. It is easy for a doctor to dismiss you and your symptoms as ‘just period cramps’ because we rarely go with a detailed explanation of what kinds of pain we have been experiencing, for how long, and its effect on other parts of our life. Therefore one small way to lower the diagnosis gap is to keep better record of your symptoms. This will be the behavior I wish to change.
Behavior change goals:
• For those who suffer from menstrual pain to keep a pain diary.
Why do this?
After a period it is easy to forget or misjudge just what kinds of pain you were in. By making notes daily you will have a better record. Will be able to tell a doctor in more detail the symptoms your having, when and for how long.
I of course did not invent the idea of diaries for pain. The NHS and endometriosis UK already have their own templates. However I feel my diary is an improvement on ones I have seen in the following way. This is a disorder that “the experience of pervades all aspects of a woman’s life”(Denny,2009), most diaries only contain questions about your physical pain. My period pain dairy contains sections with prompt questions on physical, mental and social health – all of which can be effected by endometriosis.
This diary will still be helpful even if you don’t have endometriosis to have a look at the kinds of pain you are in. You may have a milder period disorder such as premenstrual syndrome or premenstrual dysphoric disorder.
A secondary aim of this project is:
• For everyone to be more sympathetic and understand menstrual disorders are as real as diabetes and broken bones. You cannot take paracetamol and be cured.
The video will help validate those who experience menstrual pain, hopefully giving them the confidence to seek help, as they should now feel there pain is ‘real’ and deserving of treatment.
It will also offer a brief insight into what living with the condition is like for those who do not suffer from it, giving them enough information to empathise with those who do.
So in short:
· Those who menstruate: improve how you keep track of your symptoms.
· Others who don’t menstruate: listen properly to what those who menstruate are telling you.
Behaviour Change models and tactics:
Theory of Planned Behaviour (Ajzen, 1991).
My project aims at changing the subjective norm of ‘just your period’ as dismissal of menstrual pain by both those who menstruate and those who don’t. It is also to increase the perceived behavioral control of the situation for those who experience severe menstrual pain.
Subjective norms: there is a social norm for those who menstruate not to talk about their pain, those who do are normally dismissed as exaggerating. Many choice not to discuss the truth of the pain they are in, in fear of reinforcing stereotypes about ‘crazy’ women on their periods or being told they are not capable of performing a certain task because of it. Its normal for women to go to work and pretend like they are fine even if they feel like they could pass out any second. My project hopes to show just how severe the physical, mental, emotional and social impacts your period can have.
Perceived behavioural control: because of the social norm of not taking menstrual pain seriously many of those who menstruate many feel helpless, or worried about the response if they try to tell someone about their pain. After presenting a video which will cause a ‘omg that’s me reaction’ in some. I presented them with a template of a period pain diary and stated that it was ‘easy and ‘simple’ to use. Thus framing what is an overwhelming disorder to manage in a easy to document way.
Behaviour change techniques:
Storytelling: as the subject of my project contains multiple effects over a period of time and is highly emotional and personal, I believe storytelling will be the best persuasive device to use. Storytelling has proved an effective behaviour change technique; Slusher and Anderson 1996 used storytelling to debunk myths around the transmission of aids. So in a similar way I aim to debunk myths about period pain.
To construct my story of what endometriosis feels like I used studies conducted by Denny 2009 and Whelan 2007 in which they conducted semi-structured interviews with endometriosis suffers about their experience of the disorder.
The video shows metaphors and similes paired with vivid imagery and music, while the story is being spoken over the top. The video opens with a juxtaposition of flowers and feathers with needles and knifes. This vivid imagery allows the audience to see the shift from a ‘normal’ to an ‘endometriosis’ experience. The video continues using vivid imagery and music to great an emotive and powerful message that will great a feeling of sympathy in the viewer (Patel,2015).
The video has many ‘points’ about the physical, mental and social effects of this condition; those who are suffering but don’t know about endo will have multiple ‘that is me’ moments, the more someone can relate to the video the more likely they are to use the period pain diary as they will have identified a problem and immediately been presented with the path to a solution and should at this time be experiencing high behaviour control over their actions if the video has the empowering effect I intent it to.
Other non-direct effects:
Door in the Face Technique: This projected focused on one of the most server menstrual disorders, of course there are many others. I hope by project will have a knock on effect for empathy and sympathy with milder disorders as well.
I posted the video first in an endometriosis support group to see if others thought it was useful/would have found it useful themselves if they saw it before finding out about endo and got very positive feedback.
I then posted the video on my social media and in 10 Facebook groups I am part of ranging in topic from feminism to kawaii fashion, in order to reach a wider audience, as of course those who menstruate are half the planet and have numerous interests.
I used Bitly to collect data on how many times the video has been viewed and how many times the Period Pain Diary has been downloaded.
The video has been viewed 135 times and the pain dairy has been downloaded 54 times. Meaning as a percentage 40% of those who viewed the video, downloaded the pain diary. I cannot assume that everyone who downloaded the diary intends or will use it, however it does at lead show significant interest.
The view count on YouTube is 183, meaning around 50 people have found the video not through my direct link but by searching for endometriosis, or period pain online/ on YouTube.
This is a topic I have genuine passion for and would like to continue to work on in the future. I am happy with this project and believe, although its impact is small it is significant. I have recived great feedback from friends, some even thanked me for talking about it and i myself feel less alone with the disorder. It will continue to have a positive effect, as it will remain ‘live’ on the internet – so even maybe in 10 years it will still help someone who searches ‘chronic period pain’ online. In the future I hope to make #NotJustMyPeriod into a series about more menstrual disorders.
Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior And Human Decision Processes, 50(2), 179-211. doi: 10.1016/0749-5978(91)90020-t
Baldoni, J. (2011). Using Stories to Persuade. Retrieved from https://hbr.org/2011/03/using-stories-as-a-tool-of-per
Cialdini, R., & et al. (1975). Reciprocal concessions procedure for inducing compliance: The door-in-the-face technique. Journal Of Personality And Social Psychology, 31(2), 206-215. doi: 10.1037/h0076284
Denny, E. (2009). “I Never Know From One Day to Another How I Will Feel”: Pain and Uncertainty in Women With Endometriosis. Qualitative Health Research, 19(7), 985-995. doi: 10.1177/1049732309338725
Endometriosis UK | the leading UK charity that supports women living with endometriosis. (2018). Retrieved from https://www.endometriosis-uk.org/
Gupta, S., Goldberg, J., Aziz, N., Goldberg, E., Krajcir, N., & Agarwal, A. (2008). Pathogenic mechanisms in endometriosis-associated infertility. Fertility And Sterility, 90(2), 247-257. doi: 10.1016/j.fertnstert.2008.02.093
Patel, N. (2015). How to Engage and Persuade People Through Storytelling. Retrieved from https://www.quicksprout.com/2015/04/03/how-to-engage-and-persuade-people-through-storytelling/
Pratkanis, A. (2007). The Science of Social Influence (pp. 17-83). New York: Psychology Press.
Rose, G. (2005). What is endometriosis?. WOMEN’S HEALTH MEDICINE, 12-14.
Seear, K. (2009). ‘Nobody really knows what it is or how to treat it’: Why women with endometriosis do not comply with healthcare advice. Health, Risk & Society, 11(4), 367-385. doi: 10.1080/13698570903013649
Seear, K. (2009). The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay. Social Science & Medicine, 69(8), 1220-1227. doi: 10.1016/j.socscimed.2009.07.023
Slusher, M., & Anderson, C. (1996). Using causal persuasive arguments to change beliefs and teach new information: The mediating role of explanation availability and evaluation bias in the acceptance of knowledge. Journal Of Educational Psychology, 88(1), 110-122. doi: 10.1037//0022-06220.127.116.11
Whelan, E. (2007). ‘No one agrees except for those of us who have it’: endometriosis patients as an epistemological community. Sociology Of Health & Illness, 29(7), 957-982. doi: 10.1111/j.1467-9566.2007.01024.x