Tips for finding friends and growing your friendship caregiving team
Most of my volunteer caregivers are also my friends, and yours can be, too!
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I am an adult with SMA who lives independently, so when people learn that most of my caregiving happens through 20-plus volunteer friends, they tend to be a bit flabbergasted. “How?” is the common and predictable question.
I’m not someone who loves how-to articles or self-help books, because I don’t think there is a formula for success in friendship. But I would like to offer some suggestions to those in the disability community who might be feeling lonely and stuck, and who want more friends involved in meeting their everyday needs.
Start with who you know
A relative, your mom’s best friend, or a peer — you should begin with someone you know. They are all valuable assets!
Maybe they know you better than anyone, or maybe they just talk with you casually when you are in a shared space. Bump up your friendship by asking them to drive your van for an outing, or invite them over to your house to play a game or watch a movie. Spend time getting to know them and giving them permission to ask questions so they can know more about you, too.
Ask friends to introduce you to new friends
Once you’ve spent time together and feel comfortable, let these new friends know you want to expand your friend group to include others who are kind, compassionate, and available to spend time with you. Ask them to think about anyone they know who might become a good friend to you, and have them organize a time and place for you to be introduced to them.
Go visiting
Visit and join an organized (in-person) community. A church or other religious group is usually a great place to meet new friends. There are also various social clubs and groups that you can learn about at the public library, community center, or on apps like MeetUp.
Try visiting a few in your area to find where you feel seen and welcomed. Go with a friend (not a primary caregiver) so people don’t assume you always bring your own “help.” Be open and honest about why you are there — to make friends who would be willing to help care for you so you can thrive!
Make college connections
Connect with a certified nursing assistant or physical therapy program at a local college. Students who are on track to work in the medical field would benefit greatly from having a friend with a disability. It helps them learn empathy and become more aware of the challenges and needs we face daily.
Call or email the head of a department and tell them a little about yourself and the kind of help you need. Ask them if any students in their program would be a good fit for this opportunity. Offer to write a future reference or recommendation letter for them. Suggest that they could earn extra credit if they commit to a certain number of hours in a semester.
Post invitations
Sometimes people don’t offer help because they don’t know it’s needed or wanted, so let them know by posting invitations on social media (privately, to your network).
Start with small, simple, and fun asks: “The latest Marvel movie is coming to theaters next weekend and I’d love to go see it! I need a bit of help, though: I have a van but need someone to drive it to get me there. If anyone is interested in going to see it with me, please let me know!” You might be surprised by who responds!
Words of wisdom
As a bonus, I have three key pieces of wisdom that apply to any of these suggestions:
- Don’t ask for everything at once. If you really want friends (not medical professionals) taking care of you, don’t give the “I need regular showers, toilet transfers, tube changes, and overnights” pitch right away. It is overwhelming! Start with non-medical needs that are low-risk and very specific.
- Learn each person’s realistic capacity for caregiving. As you spend time together, you will learn their level of reliability, physical strength and stamina, and time flexibility. Everyone can do something, but no one can do it all, so delegate tasks appropriately!
- Don’t stop looking for new friends. The more people you add to your friend group, the greater variety of skills and availability you will have access to. And if someone gets sick, has a family emergency, or moves away, you will have others who can fill the gaps so you aren’t stranded.
I hope these tips are helpful to you. If you haven’t yet, I invite you to read my other columns about the things I continue to learn from my experience with a friendship caregiving team.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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