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International
Organisation of Youth with Rheumatism
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Is there a future for IOYR???
We, the board of IOYR are sad and disappointed at the apparent lack of support for our work and the work of IOYR. At the Contact Making Seminar in Tallinn, members promised to be more actively involved and take part in writing articles for the newsletter for example. We realise that when we are all together the energy and excitement is very inspiring and we all go home to our own lives and work and slowly IOYR fades into the background again.
For the past 2 ½ years four people have been trying to keep IOYR alive and together. Three of the four board members work full time and the fourth has been studying for her PhD. We have tried our best to meet online regularly and had 2 board meetings, including the Contact Making seminar. We have struggled to gain any response from members in relation to newsletter, paying the fee, taking part in online chats, communication and making links – all despite our very best efforts. We are sorry to say that we do not have the time or energy to carry on this way.
It is the General Assembly next year and we now have to make a report for members on the work of IOYR since July 2004. Also at the General Assembly a new board should be elected. We know that 2 of the 4 board member organisations do not wish to continue to have a rep on the board of IOYR. The other 2 organisations are not certain if they can or wish to continue.
Normally at this time of year we would be asking for your suggestions on the priorities for the future work of IOYR to take forward to the General Assembly.
Now the board proposes a different question – is their any future at all for IOYR?
We welcome hearing from members on this point – however, our experience is that we generally hear nothing from members. It would be nice to be wrong this time….
We would like to invite all the members to participate on the chat the 12th of January to discuss the future of IOYR.
We would like to thank the Norwegian Youth Organisation BURG for sending these articles. In the first they share their experiences of a youth weekend on the theme of love. In the second they tell us about their 25th Anniversary year celebrations. Lastly, we hear about BURG’s experiences of attending the EULAR congress.
To love, or not to love…
By Linda Vøllestad Westbye and Sesilie Halland
BURG arranges a Youth weekend every year for members 18-35 years old with rheumatism.
To love, or not to love was the theme of BURGs Youth weekend this year. For the first time, this weekend gathered people with rheumatism with their partners and without partners. The theme was the challenges one meets when it comes to love and sexuality when you have a rheumatic disease. How is it to be single and have rheumatism when searching for love? How is it to have rheumatism when in a relationship? How is it to be the partner of one who has rheumatism?
The Youth weekend was held at Sjøberg Vacation centre at Rennesøy, just outside Stavanger in the west of Norway. We lived in nice and big apartments with jacuzzi and sauna, with the sea as our closest neighbour. Our goal for the weekend was to give the participants a look at how the situation is for others in a relationship or who are single.
Single and having rheumatism
“My name is Linda, and I am not a disease,” says Linda Asbjørnsen (32). She thinks that some of the reasons she doesn’t have a boyfriend, is that the guys see her disability more than they see her. She is used to being viewed as funny, cool, tough, happy and cute and everybody says – Of course you’ll get a boyfriend! – “But I’m still single,” says Linda. What is it that keeps the boys away? Linda’s rheumatism is visible and she thinks this creates a barrier already from the start, that they see her disability as an obstacle.
Those who have more invisible rheumatism can have a different approach to the problem. You may start a relationship or fall in love and a long time can pass before you have to or should tell about your disease. But at some point you have to tell about it. “My advice to people who have rheumatism is to tell about your disease as early as possible,” says Gaute. He is married to Anja who has rheumatism. “If not you may risk getting a negative reaction the day you have a really bad day and you have to say “and by the way, I have rheumatism…” That can ruin a lot of the trust you have built between you.”
“Of course I think a lot about the fact that I’m single,” says Linda. “I don’t want to be single the rest of my life. But I’m positive and I focus on the solutions to any challenge that comes my way. One day also I’ll find the big love…”
Rheumatism and being a couple
Linda Vøllestad Westby (27) is married to Hans Jacob, who she’s been with since she was 17. “I became afraid and surprised the first time he kissed me, what am I to do now, I was thinking. I didn’t want him to see me when I was really ill, when I was at my weakest. But he also saw that and it went well. There’s no doubt that there are a lot of challenges. Of course it is hard to be 19, to live with your boyfriend and needing help to get your panties and socks on.”
Communication is the key to handle the challenges that come along. “My husband and I have a really good communication and we believe it is so good because of my rheumatism. Maybe we are better at communicating with each other than a lot of other couples that don’t have such a disease,” says Linda. “The domestic tasks at home are a little different. Hans Jacob does the heavy jobs and cleans the floors. I often have to lie down when I get home from work and then he makes dinner. It’s important to give something back to your partner in other ways if he has to do most of the domestic tasks. Even though you are tired you can say something or do something that shows how much you value what he does.”
Being together with someone who has rheumatism
Gaute Houge is married to Anja who has rheumatism. “It was different to meet Anja than other girls. I had to discuss with my self about what this would mean for me. But people with rheumatism have an amazing fighting spirit that we, who doesn’t have such a disease, can learn from. We can plan things, but then something happens with Anja’s health so that we cannot do what we planned. Then it’s important to do our own things, make a personal twist. I love for example to play football and other games with a ball. Anja doesn’t so she is a cheerleader. Our biggest challenge has been to have a child. It was difficult because I had to be home a lot more than planned. Anja suddenly became very ill and it was not easy to plan my work. Even though I have to sacrifice a lot, I get back so much more. I wouldn’t want to switch with anyone!”
The evaluation reports from the weekend were very positive and the value was especially great for those who were able to bring their partners.
The Golden Joint!
When BURG last year celebrated our 25th anniversary November 25, the Norwegian Princess Märtha Louise was our guest. The Princess was specially invited to present the BURG-prize “Det gylne ledd”.
BURG’s 25th anniversary was celebrated in The Norwegian Rheumatism Association’s (NRF) offices in Oslo November 25, 2005. Among the invited guests was the patroness for NRF (BURG’s mother organisation), Princess Märtha Louise, BURG’s regional groups, previous chairs of BURG Norway, NRF’s chairman and general secretary, and other partners.
Princess Märtha Louise was specially invited to present the new BURG-prize “Det gylne ledd” (the golden joint / link / part). This newly established prize will be handed out every 3rd year and is to be presented to a person, organisation or other that has made a particular effort for children with a rheumatic condition. The prize for 2005 went to professor in paediatric rheumatology at Rikshospitalet, Oslo, Øystein Førre. Førre was Europe’s first professor in paediatric rheumatology and NRF pays parts of his professorship. The Princess said a little speech after the presentation, where she shared personal experiences from her childhood when she had a classmate that had rheumatism.
BURG Norway’s present chair, Sesilie Halland, emphasized in her anniversary speech that BURG has been a very important organisation through 25 years for children and youth with rheumatic disease, and their families. Former chair of BURG, Lars Espen Rath Vestad, was responsible for the anniversary’s musical element with his trombone together with pianist Steffen Horn. Lars Espen played his newly composed BURG-fanfare, specially made for the anniversary. He also spoke about how it was to have rheumatism as a young boy, with a positive twist.
“Think of all the tings my rheumatism has given me! I’m happy that I have rheumatism! My rheumatic disease has given me so many positive experiences, and many of my friends I’ve met trough BURG.”
The anniversary was rounded of with a thorough birthday party with cakes, sweets and drinks. And new and old “BURG’ers” got a chance to chat and have a good time.
BURG at EULAR 2006
BURG was with The Norwegian Rheumatism Association at the European rheumatology congress June 21-24.
EULAR (European League Against Rheumatism) is an organisation for health professionals and patient organisations that work for people with rheumatism in Europe. EULAR annually arranges a rheumatology congress, and this year it was held in Amsterdam June 21-24. Here new research and new treatment methods are being presented, patient organisations discuss important issues, and lots more.
BURG applied for a presentation of our organisation at EULAR, with either an oral or a poster presentation. These types of presentations make up most of the congress, and they are mostly about medical research. BURG is one of few organisations for people with rheumatism that have activities for children, youth, parents and the rest of the family in one organisation. We were given a spot for a poster presentation. We made a colourful and informative poster measuring 2 x 1 meters where we presented who we are, what we do, why we do it and how.
Our poster was up one day at the congress, and Sesilie Halland, chair of BURG, and Line Kamhaug, BURG’s secretary, were available to answer any questions. But as one out of thousands of poster presentations the fight for attention for was not the easiest. We still got the chance to tell about our organisation.
The fact that we were given the opportunity to present our activities at such a big international congress shows that there is an interest in children and youth organisations. Our Dutch “sister organisation” Youth-R-well.com also got a chance to tell about their work for young people with rheumatism in The Netherlands. That EULAR is interested in giving us the opportunity to tell other organisations about how we work for and with children and youth with rheumatism shows confidence in our organisations. This puts us in a position where we can influence how other European countries will work with this group in their own organisations.
It should be noted that The Norwegian Rheumatism Association never before has had a presentation at EULAR, neither oral nor poster. BURG is very proud of this achievement and that we were able to show our work to other European organisations.
IYC 2007
The next IYC 2007 is going to take place in Sweden from 18. – 24th of July. So save the dates in your calendar! The IYC will be located not far from Malmô so you will have the opportunity to travel either to Copenhagen (Denmark) or Malmô (Sweden). You can travel from Copenhagen to Malmô with train, it is just a short ride.
You will get more details soon!
A last word from the IOYR Board…
We would like to wish all our members and friends a very happy and healthy Christmas and New Year.
Remember this is YOUR newsletter so please send us your articles, ideas and photos to info@ioyr.org