Disabilities and illnesses can be isolating. We hear that from many sources. And many days we clearly experience it ourselves. Isolation can come from many directions. Other people pull back from us or we may choose to pull ourselves back.
Some “alone time” can be very helpful and nurturing. But, most healthcare practitioners will tell us that having a balance of experiences is the healthiest way to live.
I’ve found that sometimes social events can prove to be very difficult because they highlight what I can’t do and how different I now am.
If any one of us can’t hear conversations, or see across the room or get up to fetch a drink like everyone else does, we can feel like outsiders.
One thing that has helped me has been to build a circle of friendships with others who have disabilities or serious illnesses. Not to have “complaint sessions” but to share a sense of “we can do this.” In many cases, I’ve found that my friends with “health issues” are more substantive and less superficial than healthier friends and acquaintances. Not always, of course, but often. Illness and loss leads many of us to think through our views of what matters most. And the strength and quiet insight of my disability friends can be inspiring. Our laughter can include a healthy dose of “gallows humor” that allows us to see our problems in a lighter way.
My team of disability friends helps me to stay socially connected and reminds me that my specific disabilities do not make me disabled in every way. Our conversations and interactions sound and feel just like the ones we could have had before disability or illness started to shape our lives. I don’t believe that “Team Disability’ should be the only way we play in the game of life. But I do know that having my team on my side makes me happier and healthier.
My Health Teams: http://www.myhealthteams.com/
A friend referred me to a social media site called My MS Team and I found that it was one of 24 disease / health condition based sites. It allows individuals with various conditions to seek out contacts locally, nationally or even internationally. I’ve found it to be a nice tool to augment the other support groups and friends-of-friends ways we can talk to others facing similar issues.
Here’s how they describe what they do –
We help people connect
MyHealthTeams creates social networks for communities of people facing chronic conditions (everything from Lupus and multiple sclerosis, to autism, breast cancer, and COPD). We believe that when people facing the same chronic condition are able to connect with and learn from each other, ask questions, get referrals and share tips with other people who personally understand what it’s like to face that condition, health outcomes improve. You’re not alone, and you don’t have to re-invent the wheel.
Our own group of up-beat friends: https://www.facebook.com/MSBreakfastClub1/
When I realized that there was no support group meeting near my home, I posted a note at my physician’s office asking for anyone interested in having one to contact me. A new friend reached out and told me about a monthly breakfast she and another friend had started. We have been getting together for nearly two years and have added more friends to our gatherings. While we can share illness related information, most of our talk is just full of joyful friendship!