I was in elementary school the first time my parents asked me if I wanted to attend MS Youth Camp, a camp just for kids who live with someone who has multiple sclerosis. I was an extroverted, free spirited child – but the idea of jumping into an experience of spending several days with complete strangers terrified me. I reluctantly agreed to attend after some coaxing from my parents. After just a few short days, I fell in love.
Camp has always been a special place for me. It was everything I had hoped for – we hiked, swam, did arts and crafts, ate s’mores by the bonfire, and stayed up way too late in our cabin. But we also spent time getting to know each other, talking about our experiences living with a person with MS, and learning more about the disease. This experience changed me.

In a recent blog post by a fellow volunteer (who used to be a camper when I was a counselor!), Jamie writes of her experience at camp, “At first it was a bit awkward to discuss this with people I had just met, but when you spend so much time with one group, you become fast friends. Within a few days, we were talking about the unique ways in which MS was affecting our homes. At that age the conversations weren’t overly complex, but for me it was the first-time people were talking about this openly and the first time I realized other people had homes so similarly affected.” Jamie’s words exactly sum up my experience. It was the first time in my short life that I realized that other people were dealing with the same or similar situations as me.
As a young person and as a caregiver, there is – in my opinion – simply nothing more important than finding people with whom you can connect and share experiences. To have others in a similar situation look you in the eye after you share something really tough and say “I get that, I’ve been there too” is one of the most impactful experiences of my life.

Since that first year at camp, I have returned every year in some capacity for one simple reason: connection.
“Connection is why we’re here. We are hardwired to connect with others, it’s what gives purpose and meaning to our lives, and without it there is suffering.”
– Brene Brown
Brene Brown said it best. Connection is exactly why we’re here. And it’s absolutely the reason behind Caregiver Collaborative. Studies show that 40% – 70% of all caregivers report feelings of anxiety and depression, which can often be associated with the many feelings of isolation and loneliness many caregivers feel. Feelings of isolation and loneliness can be caused for a variety of other reasons too – including the need to provide literal 24 hours support, or the lack of connection to folks who understand your experience.
For me, finding this community of people who share similar experiences, who are there to listen when I’m going through tough times, who celebrate the small wins and the big successes, and who I know I can count on has been such an important aspect of my wellbeing. I believe I first found this connection and community at camp, but I’ve since built a network around me of people and shared experiences that are meaningful for me as I move about the world.
This past summer, I went back to camp to talk to kids about emotional health. I had just come out of a few really tough weeks. My grandmother had passed away and my family was dealing with the aftermath. I had recently crashed my bike on a training ride, fracturing my shoulder a week before I was set to participate in one of my other favorite community events, the MS 150 bike ride. I was feeling down, and generally struggling a little to get back into my groove after a tough few weeks.
The place where MS Youth Camp takes place in Wisconsin is on an island on a lake. There’s a small road connecting you from the “mainland” to the island. As you cross this road, you look both ways and see beautiful trees and the lake all around you. It’s quiet in the way only nature can be quiet. You can hear the wind, the birds, and on some days – the sound of the kids playing up the road. I always stop here briefly on my way in. I pause for a moment and reflect. I set intentions for the energy I want to bring to camp. I was there to talk about emotions, sure. We had built an amazing new curriculum, and I was excited to share it with the kids. But more importantly, I was there to share that connection with these kids whom I have my own shared experience with. To help them see the importance of building their own community. To let them know they aren’t alone either.

As I met with group after group of kids, I found ways to share my experience with them. I tell them my story, and invite them to share pieces of their own. I talk about the specialness of the place we’re in – together. Some of these kids have been coming here for years, and some of them are new, but I hope all of them leave with newfound knowledge, friendships, connections, and a sense of belonging to something bigger than themselves.
On my breaks from running groups, I love spending some time connecting with the staff – most of whom (like Jamie, quoted above!) I’ve known for many years. I love walking around camp and hearing the conversations the kids are having. I reflect on my years at this place, and I start to feel whole. As I drive out of camp at the end, I stop and sit in that same spot. I thank the universe for sending me such an amazing community to be a part of.
(And then I drive to the nearest spot to pick up Spotted Cow -found only in Wisconsin! and caffeine – because talking to kids all day about emotions is tough work!)
Caregiver, I hope you find something as special as the connections I’ve found through this camp, and through sharing my experience with others.

Need some help getting started? Local organizations across the country like the MS Society, Alzheimer’s Society, American Cancer Society, and others just like it often have support services that can connect you to services like camps, support groups, respite services, group volunteer activities, councils, and other services where you’re likely to find others who are going through the same or similar situations as you. I highly recommend getting involved in some capacity, if you can.
We’ve also got some exciting things in the works here at Caregiver Collaborative to help us build on this theme of connection – and we can’t wait to share what we’ve got up our sleeves!
Caring for you,
Erin