Celebrating human connection is more important than ever
This year, World MS Day, 30 May 2020, breaks down social barriers, which cause people with multiple sclerosis to feel alone and isolated from society, through the #Conectare campaign. I’m connecting. We’re connecting.
At this point people feel they’ve lost touch. We have distanced ourselves from our family, our friends and our communities. We can’t access the world from beyond the door of the house like before. For people suffering from multiple sclerosis (MS), this is not a new reality. Many people in the MS community felt alone and isolated long before COVID-19 and continue in these unprecedented times.
This year’s World Multiple Sclerosis Day (May 30th) Association of Patients with Neurodegenerative Diseases (APAN Romania) joins forces with the international movement by the International Federation for MS (MSIF) to stop this disconnection. People affected by MS and those around them are urged to connect and celebrate connecting: connecting with the community, self-connecting and connecting to quality care.
Throughout May, APAN Romania organized specialized webinars (SM and Covid-19, SM – from diagnosis to progression, lifestyle and nutrition), weekly online psychological support meetings with the support of volunteers from the Psychos Institute or communication, made support videos and a dedicated FB page, to carry out physical therapy exercises at home.
The association organized a contest of fine art (painting, drawing, watercolor, collage, pastel) and photography to celebrate solidarity, creativity and connection. The competition was aimed at adults, professional or amateur artists, as well as children. Works of exceptional value were accompanied by truly moving messages. The album with over 200 works can be found on the association’s FB page using the hashtag #Conectare.
A support video was made on this occasion with the support of Dash Film, a creative proposal made in conditions of social distance and limitations, but a solution that shows the importance of connecting and promotes The Champions of MS, people who have quickly adapted to new challenges and have successful life goals.
“I’m connecting. We’re connecting. We’re talking about affection, we’re talking about us. I know there’s someone who feels like me and listens to me. There’s a lot of us. Different, but still so similar. Today we offer our support. Today I’ve transformed, I’m not the multiple sclerosis patient anymore, I’m Tudor. I have resumed my favorite activities, tailored to my needs now, with new friends. Dreams continue. I learned what connecting means and, perhaps more importantly, how much it can change your perspective. We all need to find the strength to meet others and what it means to us,” says Tudor.
“World Multiple Sclerosis Day is an opportunity to advocate for access to treatments, services and support, to celebrate support networks in MS Centres, and to call for changes in the health system,” reads a press release issued by the APAN Association.
Why it is so important to connect for people living with MS:
- Social barriers and stigmatisation are real, and they can make people affected by MS feel lonely and isolated – human connections can be an important way to break down these barriers and improve the quality of life of those with MS
- Building a community that supports and brings together people affected by MS is the core of APAN’s work, a crucial role in connecting people who have or are affected by MS.
- Promoting self-care and healthy living for people with MS helps them to have a positive outlook and, in many situations, manage their symptoms.
- Connecting with the authorities to campaign for better services and treatment is very important for the 9,000 people living with MS in Romania.
‘I’ve never felt so alone as when I got the diagnosis. I felt abandoned, terrified and petrified. Everything’s destabilized. Life turned upside down. Suddenly, you don’t know what tomorrow will bring”, says Eduard.
“I knew very well how to hide how I felt in my darkest days, I was planning how to get out of the equation. Until one day, I was struck by the fact that I hadn’t changed. I’m still creative, I still like the same music, I still laugh at the same jokes, I still like dating girlfriends. And then, as fast as it got to me, my depression came back and left. I feel most connected when I communicate with other members of the association with the same affection, helping other people with MS to connect. Helping others helps me and I feel like I’m ready to start living again”, says Cristina.
“A few years after receiving the diagnosis, the only thing that has not changed is my love of art. I am grateful to still be able to spread the joy brought by art to all; young or old, sick or healthy. I am happy for the #Conectare fine art and photography competition, organized by APAN this year on this occasion. He helped to raise awareness of this condition and the power and creativity that lies within each of us. We learned about MS and inspired many to continue to live!”, says Maria.