Recently I went out for breakfast with a friend who has been dealing with a degenerative diagnosis for the past several years. She talked about the struggle with getting her family to understand the role that her diagnosis should play in their relationships.
She told me something that is so relatable. Her family doesn’t often talk about her diagnosis, but they respond to it in two extremes: one is to totally ignore it even when the diagnosis is displaying itself clearly or to treat it as if the diagnosis is the only thing in the room and her personhood is displaced. They speak to one another about her and what they should do without bringing the person who carries the diagnosis into the conversation. These two responses are not intentionally dismissive, uncaring or mean even though it may feel that way and those feelings are valid.
This is the kind of situation that so many people understand. As a person who grew up with a disability it was often viewed as the elephant in the room. I often oscillated between someone who was merely a diagnosis (this was usually in medical settings or sometimes with educators who considered themselves to be experts). Or people ignored my disability ‘treating me no differently’ even when I needed things to be different (i.e., walking slower, taking rests, feeling like I could ask for and get the things I needed).
If these two extremes were my experience alone, this wouldn’t be worth writing about, but it isn’t. In fact, this friend of mine who was diagnosed later in life with a degenerative diagnosis was experiencing the dizzying oscillation between these two extremes as she tried to explain to her family what she really needed. I resonated deeply with her. We talked about how we wanted our disabilities to have a place in the room.
Sometimes they need to sit in a place of prominence while we discuss something like whether or not to try a new treatment or how to accommodate disability on a vacation to a new place. We talked about how sometimes disability diagnoses can sit quietly in the corner, but they always need a place in the room. They need to be acknowledged as a part of the person with the disability whether they take up a large part of the room or a small part of the room.
Here are some ways to make sure your diagnosis is given space in the room you are in:
  1. Ask for the things you want and need. If it would be helpful for you to take a break, sit in a certain chair, go for a walk if sitting still is difficult for your brain or body, etc. Ask for these things.
  2. Have meetings before important meetings, if you are going to meet with your doctor and your spouse, team, etc. pre-game the meeting about what your major concerns are to make sure your questions are given priority. You also may want to hear what other people’s questions or concerns are so that you can make sure these are ways you want your body talked about or it may be a question you would rather ask than have someone else ask on your behalf.
  3. You can also make jokes about making space for your ‘dx’ or feeling like you might need to use the pull-out couch to make space for it after a taxing activity.
  4. You also may need to ask for the emotional support you would like. For instance, saying to your friends, “I love hearing about your job/kids/house, etc. but it would mean a lot to me if you could ask about how my treatments are going, etc.
  5. Be gracious with yourself and the people that love you. Making space for something you would never choose like a diversely abled diagnosis whether old or new is often hard. It also can be something you are really used to with your spouse and current friends but reconnecting with old friends or having to explain it to the kids in your life can bring new challenges and can make old griefs feel new again, for you and for the people who love you. There’s space for this too. Here’s one of my favorite examples of being gracious with yourself and those that love you from Paul Reiser in Familyhood:
Discussing his pre-teen son’s view on his wheelchair Reiser said,
“...He does on occasion share simply that he hates it, and wishes it wasn’t so. In those moments I have nothing remotely helpful to say. I remind him that I’m with him on that; I hate it too. And more than anything in the universe, I wish it weren’t the case. But we don’t talk about it much beyond that. We just sit together in the midst of the loudest quiet there is. In the center of that quiet, there’s a dull thumping; a perceptibly pulsing emptiness that announces we’ve traveled to the farthest reach of our combined reasoning. At that point, we just stay there, until we’re ready to move on” (Reiser 73).
While it is possible and necessary to make meaning out of suffering it is very personal and it takes time. It is normal to want to push ourselves or our loved ones to make meaning out the difficulty of disability, this takes time and is exceedingly personal. It may be important to take some time to sit in the loudest quiet there is with those who feel these difficult feelings with you. This can be a friend, a family member, a therapist or a support group.