Sascha Gallardo – February 1, 2021
Keeping Ben’s Friends communities safe and supportive would not be possible without the help of wonderful people who devote their time and skills to meet this objective.
We have moderators who take care of their respective communities in various ways such as by screening membership applications and flagging posts that affect the friendly atmosphere we maintain.
We also have our ModSupport team who gives advice to our moderators on technical matters and on some situations in their communities.
A few years ago, Ben’s Friends started an internship program for students who are hoping to join the medical field. The objective is to help them gain experience relating to others and understand how living with rare diseases and chronic conditions is like.
Among other things, our interns greet new community members so that they would feel welcomed right away. Our interns also assist members whenever they encounter difficulties using the community site.
Over the years, our wonderful interns have increasingly been important contributors to the attainment of our goals.
Our Co-ED Clasina Field chatted recently with our Lead Interns Danielle Havord-Wier and Arjuna Srikrishnaraj about how they found out about Ben’s Friends and the things they have learned so far in the internship.
Meet Danielle and Arjuna and find out what being a Ben’s Friends Intern means to them.
Clasina: Let’s go back to the beginning. How did you come across Ben’s Friends?
Danielle:
I was first introduced to Ben’s Friends years ago when I was scrolling through a clinical forum online. I came across a post by Meli, now Dr. Melissa Jones, who was recruiting volunteers at the time. She described how Ben’s Friends has fostered a sense of belonging, friendship, and community among its members. My interest was sparked!
Danielle
Arjuna:
I first learned about Ben’s Friends in 2018 when a good friend of mine, Zaid, introduced me to the forums.
Through my prior experiences, I was well aware of the burden rare or chronic diseases place on individuals and families.
To add to that, learning about Ben’s story and his mission motivated me further to do my part in fostering communities of support for those who need it most.
Clasina: Tell a little bit about yourself. What were you doing when you became an intern, and what are you doing this year?
Arjuna:
When I got started here at Ben’s Friends, I was completing a double major in Immunology and Physiology at the University of Toronto.
Currently enrolled in the MSc program in Physiology, I have increased my involvement in the rare disease community by helping to get the word out about patient registries for those living with Congenital Disorders of Glycosylation, fundraising, and continuing my work with our UofT chapter.
While the pandemic made the journey interesting, I’m thankful that I’ve been able to continue my work with the rare disease community in various ways while still in school!
Danielle:
I had just returned to Western University to further my knowledge in the area of research when I first became an intern. I was studying topics pertaining to Indigenous and Aboriginal law, First Nation health programming, and health law.
I recently completed a Master of Science in Occupational Therapy at Western University. I loved exploring ethical and clinical decision-making from an OT perspective.
I am taking a little pause before starting my next chapter of education. I am excited to support new Ben’s Friends interns this year and to explore different communities!
Clasina: Pick out one thing you’ve learned or done as an intern at Ben’s Friends that has been particularly meaningful or rewarding to you.
Danielle:
I spent a lot of time in the Brain Aneurysm Support Community when I first became an intern.
I came across a thread that a caregiver had created after her daughter experienced a ruptured aneurysm. This particular member was seeking support after being told that her daughter had severe brain damage. She spent many months in a coma.
The community followed her journey closely as her mother shared frequent updates about her daughter’s victories and setbacks. Her daughter passed in 2018.
The community listened and responded as her mother struggled with understandable feelings of confusion, loneliness, anger, and grief.
It was an eye opening story and one that I think about often.
It helped me understand how support communities can alleviate members’ feelings of depression, anxiety, and fatigue. I learned about how important it is for caregivers to express their thoughts openly and honestly, without judgment.
I was taught new ways of coping with and overcoming challenges, and how to motivate caregivers and patients in ways that are realistic and practical.
This experience definitely influenced me both personally and professionally, and it provided me with new knowledge that was transferable to my clinical placements in OT.
Arjuna:
That’s a tough one, because there are so many invaluable things that an intern gets out of this experience. This includes things like learning to respond to the diverse needs of others, creating an inclusive environment, connecting people based on shared experiences, among several other things.
If I had to pick one, I would say this experience has really increased my awareness of the importance of community support.
For instance, certain forums such as the support community for Acute Disseminated Encephalomyelitis often have parents come on to talk about their child’s diagnosis. They come to seek advice from other parents who may have been in the same shoes before, seek reassurances about a treatment option, or to simply share their stories.
There was once a mother whose daughter was scheduled for a spinal reconstruction surgery. From the time leading up to the surgery and during the recovery phase, members in the community checked up on her, providing emotional support. The mother also updated us on the recovery phase, including how physiotherapy is going.
Now this thread and others will be useful for anyone who may have to undergo something similar, as they exist in the communities forever, even after the discussion has ended.
To be in such a situation can be lonely, and I had the unique opportunity to closely see how valuable support groups can be for those seeking help, especially in the context of rare diseases.
Clasina: One sentence of advice for anyone thinking of being a Ben’s Friends Intern.
Arjuna:
If certain situations seem tricky, don’t be afraid to ask the moderators for help! You’ll notice that it is a fulfilling experience. I noticed that even small acts can make a large, positive difference in the lives of those looking to obtain information and emotional support!
Danielle:
Ask meaningful questions, reflect on the answers you receive, take breaks when things feel heavy, and know that you are making someone’s recovery journey a little bit easier.