Choosing Your Narrative

The other day, I had a really interesting conversation with my sister about her dog, Loshi, who has three legs. She was discussing her frustrations about the looks of pity that the dog gets when they walk down the street. He is a happy, playful, and adorable pup (No but really - how cute is he? I love him so much). He has a great life. But because he looks different and walks differently from other dogs, people often assume he is lacking or needs sympathy. Let me tell you, that dog runs just as fast and jumps just as high as any dog his size that I've met. It is frustrating to my sister that we associate that difference as such a negative. Now, that's the experience of a pet and a pet owner. Let's talk about humans. This culture of having to look, think, and be a certain way to be considered "normal" is all around us. It is also a part of every day for people with any sort of difference, disability, or health condition.

I believe, generally, that people have good intentions and do not intend to hurt those around them. At the same time, people are curious and sometimes that curiosity lacks boundaries. It feels like people stare a little longer than natural, ask one more question that feels too personal, and make comments that do not sit right. Regardless of intention, it can feel terrible.

I talked about this topic a lot in the body image groups I used to run for people going through cancer treatments. It was always a really anxiety-provoking piece of someone's journey. Sometimes, it led to people avoiding social situations and people altogether. They would stop going to places and doing the things they love because of that fear of judgment from others. As their occupational therapist, and a person invested in their wellbeing at all, that always concerned me. I firmly believe that no difference in bodies or minds should limit us from doing the things we love, in the places we love, with the people we love! (I guess that's why I became an occupational therapist...).

The most effective way the group found to cope with this was to have each member create a narrative or story that they were comfortable with in regards to what they were going through. It was important that it was pre-written and, to some extent, rehearsed. That would allow for a sense of control in moments of anxiety or anger. It was in their back pocket as a way to say whatever they knew they felt comfortable with. Each person created a short story and a long story. The short story was intended for strangers, acquaintances, and friends/family they just didn't feel like really getting into details with right now. The long story included the parts of their journey they felt comfortable sharing with those close to them (or not so close to them if they were more open).

Doing this, each person said that they never walked away from these experiences feeling ashamed by something they said that was over-reactive, frustrated that they did not stand up for themselves, or embarrassed that they did not know what to say. I have since recommended this method to people with physical differences and mental/emotional health challenges as a way to feel prepared when they are challenged with questions, comments, or looks that make them uncomfortable.

These are some of the short stories or one-liners they used:

• "My legs don't work like they used to, so the chair helps me be able to do all the things I love to do. That is the most important part of all of this."

• "I lost my hair to cancer treatment. I am starting to feel better now."

• "I was going through something personal, so I had to miss ______(work/school/etc). I would prefer to keep it private and hope you can respect that."

• "Yes! I am part robot!" (This person liked to use humor to cope...always made me chuckle and it was how they felt most comfortable.)

• "Today, I'm not feeling my best and I'd rather not talk about it. I appreciate your concern, though. I will let you know if I do need anything."

• "I'm really not comfortable with that question/comment. If I decide to share that part of my experience with you, I will let you know."

Now, unfortunately setting a boundary does not mean all people will respect that. It is also the question of "what do I do if someone does not get it?" The way I've always seen it is that there are two options:

1. Re-state your boundary more firmly, if you are comfortable with that and want to put in that effort.

2. Walk away. Your energy and peace of mind are more important than that argument.

Despite what many people believe, living with a specific physical difference, diagnosis, chronic illness, etc. does not mean you have to be the spokesperson of that experience for all people to learn about it. (Let me say it again for the people in the back - YOU ARE NOT REQUIRED TO BE A SPOKESPERSON FOR THE EXPERIENCE OF LIVING WITH A BODY THAT LOOKS OR WORKS DIFFERENTLY!) You owe no one an explanation or an extra moment of your time if you don't want to give it. You have to do what is best for your health and happiness. That means living a life filled with the people and activities that you love. That means choosing your narrative. That means choosing yourself.

(PS - Follow Loshi on instagram at @loshigram)

#chronicillness