#NotJustMyPeriod
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.
The Problem:
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.
Personal motive:
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.
Research:
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.
The Project:
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.
Measures:
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.
Concluding thoughts:
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.
References
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
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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//0022-0663.88.1.110
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
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