Here is Aino-Maria’s answer:
It’s easy for me to tell you about our plan to organize a youth camp, but before we made a plan of what we wanted to do, we needed to know why we want to do it. And even more important than that, I want to tell you, why you should be part of it as well!
The thing that brought us together to plan the camp, is the fact that we all have some rheumatic diagnoses. But this doesn’t need to define us, we are so much more than this, and this is what we want to show to each other as well! Together we are stronger and we find inspiration from each other. Together we can learn from each other and from ourselves.
To share your life with this diagnosis can be a hard battle. Every day can be different, and there are a lot of attitudes and feelings included in this battle. The most important thing to remember is, that every battle is different. We might have the same diagnosis, but the battles, pains and experiences we face are always unique. However there are also good moments, moments of triumph, those moments when we accomplish things we once thought impossible, the people we have met along the way. These are the things I try to focus on, these are the moments I thrive on.
I don’t know what kind of paths you have walked but I can tell you about my own journey. That road has taught me so much.
I have learned that I don’t need to be ashamed of my arthritis. I was diagnosed with juvenile arthritis when I was six years old and during my teenage years it was something I definitely didn’t want to share with everyone. I didn’t want to face any limitations, and I definitely didn’t want to be seen as a sick person. I was lucky to get good medication, so for me it wasn’t a big problem to hide my diagnosis.
However then I started to feel the magic of meeting others who can relate to my experiences. It is the magic of peer support that makes one stronger and inspired. There is a lot of power in our stories. To share what kind of challenges we have faced but also what kind of solutions we have come up with.
Sometimes we need to explain ourselves to others, and sometimes we are not properly understood. Sometimes we need to say no to the fun and cool stuff, but it doesn’t mean we are choosing our diagnosis over our friends. It’s the diagnosis making that choise for us. I hope that when we have the courage to talk about it, others will understand.
As I have grown up I have started to focus more on the good outcomes. My diagnosis has taught me to be independent and how to take care of a lot of things. How to deal with doctor’s appointments, labratory tests and fill in different applications for Social Insurance institutions etc. Of course it has also taught me a lot about listening and taking care of my own body.
Ultimately the best lessons are those moments I have shared with others. The feelings of connection, understanding, support and trust. As I can’t find anymore words to explain these magical moments of support and community, the best solution I have is to invite you to take part in our youth camp and you can discover for yourself what it can be like! Be part of the magic, We can’t get there on our own.
To get this camp together we formed a group of young Nordic volunteers who have their own experiences of living with arthritis, peer support, youth camps and event planning. We have had two meetings in Stockholm and Helsinki, but we are mainly working through social media. We have shared a lot of ideas and thoughts, and I’m sure we can all agree that even though the camp hasn’t started yet we have already learned a lot of the process. To be part of this project I’ve had the chance to meet new people and make new friends. A chance to get connect and inspired. But also we have all learned a lot about event planning and working as a group. We have learned that in order to achieve our goal we need to work together, stay open-minded and flexible. In group work and in life in general, especially when you are living with arthritis we are always learning to overcome challenges and never give up!
Registration is open from 1st-10th of September
To register send an email to firstname.lastname@example.org with the following information;
Name, Date of Birth, Country of residence, Email, Phone number and possible allergies. Also let us know what kind of Rheumatoid diagnosis you have and if there is anything special you think we should know in advance.
You can find more info from here: https://www.suomenreumanuoret.fi/tapahtuma/nordic-rheuma-youth-camp/