Cover.pdf 1 20.12.2020 19:22:29
December 2020
NEW LEARNINGS ABOUT OBESITY Alison Clare
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M Y #LIVINGWITHOBESITY CM MY DAY REFLECTIONS CY
CMY
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ECPO supports their national patient organisationsSusie Birney
WELCOME
SUMMARY
ECPO
2 Welcome
3 Editorial
4 Looking back at 2020
5 ECPO supports their national patient
6 New learnings about obesity
8 #LivingWIthObesity Day Reflections
10 Aspirations for 2021 across Europe
13 Looking forward to 2021 It is with great pleasure and pride, that I welcome you to our new ECPO magazine. In collaboration with UrHealth4Life. This edition contains a host of articles and special interest UrHealth4Life pieces from our dedicated team, who are doing fantastic work 16 Urhealth4live editorial across Europe in the Obesity field. 17 Jackie on the frontline We at ECPO are working tirelessly in our mission to improve the lives of people who live with Obesity. One of the many projects un- 18 What Xmas means for me dertaken since our last publication, was the creation of a video in 20 Compassion-focused therapy which we listened to people across Europe share their experiences What is it and how can it help? of Living With Obesity. The video was launched at our first inte- 22 Roulades with red cabbage ractive “call to action” webinar in October. The webinar addressed and dumplings weight bias and stigma surrounding Obesity with speakers from the 24 Dealing with Covid-19 medical and patient community. This mission reflects our conti- nuing #LivingWithObesity campaign. Both the video and webinar 25 Christmas cabbage were a huge success and received by patients and health profes- sionals both nationally and internationally with great respect and 25 Rum balls accolade to our hard-working team. The webinar and video can be found on our web site https://eurobesity.org/ 26 New year, New me trap
27 Polvo à lagareiro On a more personal note, I feel honoured and humbled by the selflessness of our the ECPO team members. More so in the increa- 29 Turkey and cranberry meatballs singly challenging times of Covid19, their enthusiasm and dedica- tion to our mission is truly a privilege to be a part of. Never more 30 Cooking- a mindful experience than now is the saying “alone we can do so little, together we can with children do so much” been more apt. With the continued work of ECPO we 34 Spicy christmas fruit loaf continue to make a difference in lives of people across Europe and the world.
Audrey Roberts Cover photo: Vice President, ECPO Hafsteinn Róbertson EDITORIAL this year has been exhausting, obesity community has been heard worrying, and frightening. and recognised on a political level Unfortunately for many people liv- within the EU commission. ing with obesity and NCDs the na- Therefore, I am excited to bring you tional health systems have not coped this seasonal edition of our mag- well with the pressure, and many azine, as many will say ‘What did find themselves hoping for greater ECPO do in 2020?’. resources in the form of treatment We reacted. We created. We opened options in 2021. a virtual peer to peer community. We As a European organisation of vol- expanded our conversation on social unteers, with a small secretariat of media. We engaged various stake- people living with obesity and var- holders with an aligned mission on Vicki Mooney ious co-morbidities, we can relate obesity disease recognition. We con- Executive Director, ECPO to these concerns and empathise. tinued our trainings, and we grew We are a community of people who our secretariat of people living with live with Obesity and various NCDs, obesity, and the best part, we had a f I can say one thing upon many of us have cocooned in 2020 reach of almost 8million people in 1 reflection of our European for fear of contracting COVID-19. day with our #LivingWithObesity day team this year in 2020, it is Many of us have lost loved ones due campaign. a wonder of how each and to COVID-19, and many have been This seasonal edition of the magazine every single one of our na- unable to attend a funeral due to will bring you many personal reflec- tional advocates have har- lockdowns. tions and much content which I will Inessed the power of resilience, in This is exactly why I want you to personally reflect on and endeavour light of the most challenging year see the outstanding work of our or- to implement. the majority of us have faced. ganisation and team in 2020. De- This will be a very different Christ- spite the impact of COVID-19 on our mas period for many; however, I I can sadly say that we have all had community, we have thrived in our wish you a restful period and a peace- our lives turned upside down this outreach. Imagine that… The most ful New Year, and we look forward to year. For some they have welcomed medically vulnerable community of continuing our collaboration in 2021. the opportunity to be with family people made more progress on a Eu- whilst working from home, for many ropean level than many other com- the financial hardship has been munities who are beside us address- Vicki Mooney incredibly stressful, However, sadly ing our cause. Executive Director, ECPO for many people who live with NCDs, Finally, the patient voice of the
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ECPO
ECPO SUPPORTS THEIR NATIONAL PATIENT ORGANISATIONS
he European Coalition for Peo- with stress, how to talk to family of HCP Maura “Living alone and in isolation, these ple Living with Obesity (ECPO) about weight, to name a few. online meetings have been beneficial to me both have played a vital part in hel- We began inviting healthcare professio- for my physical and mental health. They made ping ICPO to begin the process nals to join us at the end of the meetings me feel safe and connected. Thanks to ECPO for of incorporating our organisa- and this proved to be valuable for both those this viral licence. You will never really know the tion. attending for support and the HCP themsel- importance of your generous offer to ICPO” TOne of the most important matters for us ves. Catherine “Where would I be without my was to become incorporated as a non-profit It soon fell into a pattern. Meetings have ICPO family? You have been my saviour during organisation, which meant hiring a com- been rotated to different days and different this Covid lockdown. Thank you ECPO for your pany secretary to compile the necessary pa- times to suit everyone.. The average num- help in getting our group up and running” perwork for the Company Registrations Offi- bers attending range from 25 people to our ce (CRO). We did not have any finances to do highest record of 43. We have been joined by Bernadette “Thanks to ECPO for helping to this, and without the start up grant provided 20 health care professionals, some on more incorporate ICPO & providing the meeting plat- by the ECPO, this would not have been pos- than one occasion. form as it ensures the ongoing security of having sible. support meetings. These are so helpful on both an We have held just over 40 virtual informative and emotional level, particularly at On August the 11th we incorporated as support meetings since March. the given time” the Irish Coalition for People Living with Here are some of the thoughts of our Obesity (ICPO) committee about the meetings: The board and committee are sincerely When Covid-19 broke in March 2020, it thankful to ECPO for their generous assistance meant that face to face meetings were can- Fidelma “The meetings are invaluable to with funding and mentorship which enabled celled indefinitely. Family walks were cancel- me. I don’t feel alone with this problem, it’s us to see our plans for ICPO begin to come led. Appointments with healthcare providers great to have people in the same boat to talk true. and multi-disciplinary teams were put on with and listen to” hold too. Uncertainty, isolation, fear and worry Diane “ICPO meetings are a great support were only a few of the feelings that many for patients with obesity. Patients can support people living with obesity were going throu- and collaborate so that no one has to go on the gh. journey alone” ECPO offered funding for us to obtain a licence for the meeting platform “GoToMee- Nicola “The ICPO online meetings are a cru- ting”. This allowed us to host meetings online cial support for me. They have helped me work when, how, and as we liked. on my health and habits which is vital for those We began hosting meetings once a week, of us living with obesity, especially for those of and this quickly increased to twice a week as us who live far from the physical clinic and can’t the demand and need was there. We would attend the groups such as mindfulness, cookery chat and support each other with a topic whi- and exercise class” ch could be about emotional eating, coping
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not), they probably have some bias towards are hidden out of sight three floors up, behind ADVOCACY us. How do I explain that since I was small, maternity and menswear. I could wear stan- I have dreamt of waking up in the morning dard size shoes for the first time since I was and unzipping this heavy, cumbersome body 16. I never wanted, and feeling free to run and I exercised and enjoyed it for the first time jump away? How do I explain that this body in my life. doesn’t feel like mine, and I don’t want it, and if the answer is to love it and look after it, I What happened next may be familiar feel totally stuck. to some of you. In order to continue this There have been times when my body has downward trajectory, I needed to continue to felt like it belonged to me – like I enjoyed it restrict my calorie intake. But I was done – I and could live in it. They are usually the ti- was eating the least I had ever eaten. I was mes my body is the smallest, the leanest it very often incredibly hungry before my next has been in my adult life. I lost a significant snack or meal. The days I tried the new, lower amount of weight through calorie counting a calorie amount, I was so hungry I thought few years ago and thought I had finally cra- about nothing but food all day. cked the code. Alison Clare Where I had felt freedom, NOT to think ECPO member I was still Obese according to doctors, but about it for months, it now was consuming I felt different inside. I could move more ea- me again. I wasn’t hungry for peanut butter sily, breathe more easily. I could shop on the and apple slices, or Ryvita, or something like ground floor in the standard size section, ins- that either. I was hungry for fatty, sugary sna- tead of going to where the plus size clothes cks and meals, the comfort of chocolate and n lockdown, I found myself without a job to do, and being in the fortuna- te position to have some understan- ding of zoom and social media. I started working with ECPO in their communications team, buil- Iding a library of content, and strengthening the brand guidelines. It’s been amazing to work with such a wonderful team who have really welcomed me with open arms, and to be able to see the impact on government policy and perception that this team provokes. I’m so grateful to have this space to talk a little bit about how I have found the experien- ce, and what I have learnt about my own jour- ney with Obesity, and my own body.
I have been living with Obesity for most of my life, but have been prone to internal stig- ma and negative self-talk. The things people say to you about how you look, eventually be- come your own narrative, until you not only believe them, but that’s how you start to view everyone who shares this condition. “Just get off your backside”. “Eat less”, “Move more”. “You’re just making excuses”. “I know someo- ne who knows someone, who lost 12 stone on Slimming World and kept it off forever, so you’re just not trying hard enough”. It is hard to explain to people who’ve never experienced exactly what living with Obesity is like, especially as (whether they admit or
6 EUROBESITY MAGAZINE crisps and bread and that feeling of being per week and have totally different experien- can do that again. I tried pole dancing classes. absolutely blanketed by food. So, I thought. ces. I learnt to do the splits. In lockdown I have Maintenance it is, and maintenance worked I noticed the stinging sense of unfairness taken contemporary dance classes on Zoom. for a while. I wasn’t lean so much anymore, that I was the one who ate Greek yoghurt for I have tried my best, and with the support of I became solid, muscular. I could lift heavy breakfast, while he had two Mars bars and ECPO, to do and feel everything that I didn’t weights; I made an attempt at pole dancing. I was – although I admit with some bias – still allow myself to do and feel everything in the looked like it would be difficult to knock me looking amazing. I learnt that this is not a past because of my weight. over. I enjoyed this too, this was different to disease about will, or want, or even so much feeling so vulnerable. about individual choices. It’s about genes and It is sometimes really hard work to view endocrinology and lots of other long words I the stats and figures and see that it is a lot of Obesity has always functioned partly as am still working on the meanings of. effort to maintain weight loss. It is sometimes protection, and partly as my biggest weak- really disheartening, and that’s part of my ness. When I am bigger, its like people don’t And so, in the process of spending time journey too. It is okay to be disheartened. But actually see me. I become invisible. However, around these incredible advocates, I’m lear- what helps me now is knowing I have a ne- if you get too big, people start to notice you ning to speak well to myself, and think well of twork of people, across Europe – who unders- again. They yell things in the street. They be- myself. My body has kept me alive for thirty tand, who have developed ways of thinking come inexplicably concerned for your “heal- years, despite abject hatred and crash diets and speaking about Obesity that are incredi- th”. and eating disorders and just about every- bly compassionate. A man once stopped at a busy roundabout thing else I could have thrown at it, metaboli- to open the door of his car and yell obsceni- cally speaking. This is an achievement. They are making the bold strides to chan- ties at me. A man at university said that to find ge public and government perception that me attractive would be a fetish bordering on I have experienced pushing more on a need to be taken, and it is an honour to have perversion. When I could push 100kg around gym machine than an American footballer. I a behind the scenes role. without breaking a sweat, comments like that didn’t hurt. They made me laugh. “I could eat you for breakfast”, I would think. “I could lift you above my head till you cried”, instead of always being the one who cried.
The pull of food for me, got too much, es- pecially once lockdown began. But at the same time, I joined this organi- sation and started to learn things about my body that I had never been told, by anyone in the medical profession, or anyone who spoke to me about my weight or nutrition. I learnt, while making infographics for our “Living with Obesity” campaign, that Obesity is a di- sease.
This shocked me. Surely, it’s just my fault. But the experience of reading the scien- ce behind these claims, as well as starting to view myself as like the other incredible patients I spoke to, wore me down. Well, I would think, I wouldn’t say the others on the team are weak-willed or greedy. They actually all seem incredibly disciplined and hard- -working. There’s no reason why I should be the only one who is somehow unacceptable.
I learnt that it’s likely that my gaining and losing weight is genetic, and for the first time I noticed that my partner eats vastly more than me, and makes “worse” choices, and is not living with Obesity. I noticed that we cou- ld go to the gym the same amount of times
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I was really looking forward to participating and watching ECPOs virtual webinar, I anticipated great things and I certainly was not disappointed! I learned so much from each of the speakers, they were engaging and insightful, if you haven’t watched them, have a look at
our website www.eurobesity.org/livingwithobesity-webinar/.
I’m looking forward to our ongoing plans to have more of this type of engagement in the future as our ‘Patient Lounge’. I’m so proud of our team! - Audrey Roberts
-Susie Birney
- S eig Sigur ard ttir - Andre Hea ing, Director of Co unications.