Talking to Others About SMA

What are your tips for talking to your family and friends about SMA? What are your tips for talking to your coworkers or casual friends about SMA?

I don't really talk about SMA with my family

Mike:

This is not something I do with family and friends. Which is kind of funny considering I write and speak about it to strangers. I have always refrained from discussing the ins and out’s with my SMA diagnosis. Who wants to hear about someone’s ailments? I know I don’t. At the end of the day I don’t want to be known for my disability. Yea, it’s a part of me but it’s not who I am. I am so much more than any condition. That being said, I believe my disability has made me the resilient person I am today.

Keeping it factual when talking to casual friends

Samantha:

Family and friends, I feel, come to conversations about SMA with love and support. It is easy to share and I feel willing to answer questions and provide more information so that they can better empathize with where I might be coming from. When talking to coworkers or casual friends I tend to keep the information about my SMA basic and factual. I want to provide enough information to take the mystery about it away but not too much where I cross my own boundaries regarding my personal medical information. You don’t owe anyone an explanation about your SMA and some days you will want to educate about it and some days you will not. That’s ok!

Involving my friends in my care

Ainaa:

I usually will make sure they’re involved with my daily routines. Some might not understand well if I’m just saying what I can and can’t do. So in the end, I decided to make them involved together with me.

I had my first staycation with my friends last year. My parents were not confident enough to let go of me but I convinced them that my friends are capable of it. We booked accommodation. It wasn’t a disabled-friendly accommodation but my friends make sure that I am comfortable throughout the stay. As a result, we had a wonderful experience and of course, they learned more about SMA with me.

As for casual friends, I would encourage them to read more about SMA. Everything is at our fingertips. If they don’t understand, just ask. I am more than happy to answer their questions. Curiosity leads you to want to understand how things work, not just accept them as they are. Understanding how SMA people live, will lead to meaningful friendships and interesting conversations.

Here are some articles on the topic:

Talking to an Employer about SMA

For Parents: Advice on Talking to Young Children About SMA

Maintaining Relationships with Family and Friends

Maintaining Friends While Living With a Disability