This year, for World IBD Day, EFCCA would like to promote the discussion on IBD and wellbeing.
With our awareness raising campaign we want to start a dialogue and discussions on the psychological impact of the disease. Through a social media awareness raising campaign leading up to 19 May we want to show the hidden facts about what it is like to live with IBD. Under the hashtag #breakthesilence we want to show the world how a person with IBD really feels.
Once we have initiated the dialogue amongst our members and the IBD patient community we would like to take the main issues raised during the #breakthesilence campaign to Health Care Providers and other stakeholders for them to listen and watch to find together solutions that will have a meaningful impact on a person´s quality of life.
Why IBD and well-being?
Living with a chronic, and often painful, illness can take a toll on a person´s mental health and emotional well-being. It can be challenging and frustrating to manage not only the physical symptoms of Crohn’s disease or ulcerative colitis, but also the stress, worry, depression, and anxiety that someone may feel along the way.
We see often that people with IBD do not really tell their story. They might live with pain and think it´s just part of the disease. They might feel bad about their self-image but do not talk about it. They might have good medical scores related to their disease, but their quality of life is poor.
With our campaign we want to:
- start a dialogue and raise awareness on the psychological impact of the disease.
- provide the public, health care providers and other stakeholders with a better understanding of the main issues as concerns IBD and Well-being.
- talk to Health Care Providers and other stakeholders and to find together solutions that will have a meaningful impact on a person´s quality of life.
We already know that there are several taboos and stigma that people with IBD are faced on a daily basis that relate to:
- IBD and intimacy
- social and work relationships
- social isolation
What is well-being?
The term well-being can be interpreted in many ways and includes perception of health, a good economic situation, happiness and many other aspects of daily life. For the purpose of this campaign we are referring to a state of well-being as described by the World Health Organisation which defines well-being as
“a state of complete physical, mental and social well- being and not merely the absence of disease or infirmity”.
IBD and intimacy
Personal relationships can be a challenge to navigate at the best of times but adding a chronic condition like IBD into the mix can make some of the challenges tougher, both physically and emotionally. IBD can bring with it feelings of embarrassment and shame, low confidence, and insecurities about body image, all of which can impact upon personal relationships in a negative way. People with IBD may become more cautious about getting emotionally close to people or starting a new relationship.
In a survey that EFCCA carried out previously an alarming 40 % of the over 6000 respondents responded that they were prevented from pursuing an intimate relationship.EFCCA within the #breakthesilence campaign is preparing some resource material on this specific topic. What is even more concerning is that 84 % of physicians rarely or never discuss with the patients how IBD is affecting their sexual life.
On the occasion of World IBD Day we have prepared a leaflet to breakt the silence on this taboo subject!
Download file: ENGLISH IBDandIntimacy.pdf
PORTUGUESE Intimidade e DII.pdf
Events in support of World IBD Day
Please visit the World IBD Day website to find out what is happening around the world. The website is an important tool in providing a unique platform for sharing activities that are taking place worldwide and has become a reference point to the international IBD community and those interested in World IBD Day.
World IBD Day was created in 2010 by 5 founding members including the Crohn’s and Colitis Foundation (US), the Crohn’s and Colitis Foundation Canada, Crohn’s and Colitis Australia, Crohn’s and Colitis UK, ABCD (Brazil) and the European Federation of Crohn´s and Ulcerative Colitis Associations (EFCCA).
It takes place on 19 May each year and unites people worldwide in their fight against Crohn's disease and ulcerative colitis and to show support for people living with these conditions as there is still little public understanding of the pain and chronic suffering with which IBD patients courageously cope every day of their lives.
For more information please visit: www.worldibdday.org
Join our campaign on social media!
1) Share your events with us!
If you are part of a patient organisation please let us know your plans for World IBD Day 2021. Write to bella.haaf@efcca.org
2) Become a Supporter!
If you are an IBD activitist, or your company or organisation wants to support our cause please join our campaign!
3) Download and use our communication material
Download: world-ibd-day-2021-facebook-cover.png
world-ibd-day-2021-square-post.png
Break the silence - leaflet on IBD and intimacy
4) Join us on Social Media!
Help us become more visible! Tag your posts with #worldibdday2021 #breakthesilence, use our facebook banner for World IBD Day world-ibd-day-2021-facebook-cover.png
We would like to hear from you! Talk!
How does the disease impact on you psychologically? What are the masks that you are wearing on a daily basis? How do you really feel? Are there things you feel you would like to talk to your doctor about but feel there is not enough time or it does not seem important?
Your story format you should be around 350-500 words. Your story can be submitted anonymously or if you are okay with it we are happy to publish your name and photo (or a video clip no longer than 30 sec if you prefer an audiovisual message). We would share your story on EFCCA´s social media channels (Facebook and Twitter).
Once we have initiated the dialogue we would like to take the main issues raised to Health Care Providers and other stakeholders for them to listen and watch to find together solutions that will have a meaningful impact on a person´s quality of life.
For more information please write to: bella.haaf@efcca.org
Sponsor:
Our World IBD Day 2021 campaign has been supported by an unrestricted grant from the following sponsors:
Pfizer, Takeda, AbbVie, Galapagos, BMS, Janssen and Beyond Communication (www.beyondcommunication.agency)
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