Learning About a Diagnosis: What to Say When You Aren't Sure What to Say

When somebody tells you that they have a disability or that their child has a disability, it can be hard to know exactly what you should say. In general people don't want to be hurtful, but they also aren't sure how to show their support. As a result, people often fall silent, assuming that saying nothing is better than saying the wrong thing. In my own experience, that hasn't been true. Silence can feel isolating and "othering". It can feel like people don't care about you or are afraid of being near you.  A few words can make a big difference in showing that you care about someone and what they are experiencing. In my own experience, I'd rather somebody say the wrong thing (while remaining open to feedback about inclusive language) rather than saying nothing at all. So, I thought it might be helpful to do a post about things you might could say when somebody you care about shares their diagnosis with you. As with most things you'll find here, (unless stated otherwise) these are my ideas based on my experiences (both as a person who has her own struggles and as a person raising a child with a disability). What is true for me may not be true for everyone. 

A few suggestions of things to say when a friend shares a new diagnosis: 

  • How do you feel about your diagnosis? 
  • What would be most helpful to you right now? 
  • What's the next step in the process? 
  • Tell me more about your experience. 
  • How can I best support you in this process and as things progress?
  • Is it okay if I check in with you about this?
  • Is this something you feel comfortable with others knowing, or should I keep it between us?

A few suggestions of things to say when you are learning about a new or existing diagnosis:

  • Is there anything I can do to be more supportive? 
  • It was brave of you to share that. 
  • Thanks for being vulnerable.
  • I'm here and I care about you. 
  • Where can I learn more? 
  • None of this changes how I feel about you, you know that, right? 
  • I'm not sure exactly what to say, but I want you to know that I care about you and that I'm here for you.

A few things I would not recommend saying & why:

  • "I'm sorry"- This is nuanced and sometimes it is totally appropriate to say "sorry". For a terminal disability or a disability that will significantly shorten the life span or significantly impact quality of life, it is fine to say sorry. But for many chronic disabilities, there is not anything to be sorry about other than being sorry that the world is structured for and caters to able-people. Many people living with these sorts of disabilities don't want pity. What they need and want is for you to accept them as they are and for the world to offer them every opportunity and all of the access that an able person has. In general we don't spend a lot of time feeling sorry for people who are particularly short or left handed or wear glasses. It's just part of who they are. Do they have unique challenges in navigating the world? Sure, sometimes. Do we pity them for it? No. Do they spend a significant amount of time hoping they were different? Probably not. There are lots of adults who have autism or have a disability that limits their mobility/hearing/vision, etc who have very fulfilling lives and say that they do not want to be "cured"...they don't view themselves as "broken" and often can't imagine who they would be or what their lives would look like without their disability, but they do typically advocate for acceptance and would like to be able to access all the things they need/want to live a happy fulfilling life. Sorry is sometimes an automatic response when we don't know what to say but I would just suggest you really examine why you're sorry and what there is to be sorry for before saying it. 
    • PS-"Sound and Fury" is a great documentary on this very topic. I highly recommend it as it shifts the narrative about deafness and disability in general.
  • "I just don't see it"- Unless you are an expert in the field and in the process of diagnosing the person you are referring to. Don't. Just don't. Nobody should feel like they have to "prove" their disability to you. Many people living with invisible disabilities learn to mask their symptoms. It doesn't mean they don't exist or that they do not have a disability.