I so often love Brianne’s comments, questions, perspectives. And this one is particularly important. When my people *understand* what’s going on with me, that’s great! I feel seen, cared for, appreciative that they’ve taken the time to learn. But do you know what’s even more awesome? Having folks in my life who believe I’m a reliable narrator of my own story of existing in my own body.

One of the things I’m most grateful for, is that I’ve cultivated relationships with folks who just take me at my word about my needs, boundaries, limitations. It is exhausting to have to explain or justify things to get access or accommodation.

I have an assistant, A, who knows me well. She’s been in my house five or more days a week for 8 months. Does she know what my body is doing at any point, and the underpinning dynamics of my illnesses? Some. And that’s helpful. But she really knows what I can and can’t do.

In late April, I went to an eye appointment. It was the first time I went to a medical appointment outside my home since October 2019. I started with contacting the doctor’s office with access questions. They were helpful (and also wrong), and didn’t ask questions about why. That was a good start.

I made the decision before booking the appointment that my assistant would come with me. I’d never done that before, and I was hopeful that it would make a big difference. In part, because I didn’t know if I could trust the person I corresponded with. In part, because many times that I leave my home, something stressful impacts my experience. And I knew I could trust A to deal with it for me.

We ordered attendant handles for my power wheelchair so that she could push me back while my eyes were dilated.  I prepped for the appointment itself with my usual documents (meds lists, my appointment notes, stats from my data tracking). I made a list of everything I needed to take with me. I asked A to help prep ahead of time. And because she has access intimacy with me, she knew what and why. But all that was really necessary was just the belief.

She walked alongside my chair on the way there. Navigated all the inaccessible entrance issues, checked that I had what I needed, offered to stay or come back, negotiated how she’d know when to return, texted me to check in toward the end of my appointment, pushed me home while checking in about speed,  When we got home, she made sure I had what I needed, and that a dinner plan was in motion.  Despite the challenges, I did OK, with planning, and with a good assistant.

Recently, I had the opportunity to attend a social event at a home I didn’t know.  In the end, I couldn’t go due to the heat. But I planned nonetheless. I asked the host if she could give me a quick video tour of the space in advance, so I knew how to prepare, and what would be manageable. She simply set yes, let me know when she could do that, and did so. It was so helpful! The space wouldn’t be that great for me, but with information, I could figure out how to best make it work, and decide what equipment I needed.

I also needed an escort to take me, which was really cemented in my mind after the eye appointment. I have friends who have done this before, but this time it was appropriate to approach someone new.  While we didn’t finish all our negotiations before I realized the weather would prevent me from attending, we started that discussion. Right from the beginning I said, I’ll need you to drive, to get my chair in and out of the car, help carry things, stay for the event, get up and fetch things like food and beverages while I’m there, bring me home whenever I decide I want to leave. I clearly stated my needs, L agreed to them with no hesitancy, and we can trust each other for clear communication.

I hear a lot of folks in the chronic illness community complain about the dynamics Brianne mentions. It makes me concerned for the state of their relationships, and the state of their boundaries.  I think there are things we can do to help. And of course, the burden is also on others to respond appropriately.

I recently read Nedra Tawwab’s new book, Set Boundaries, Find Peace, and it was fantastic. One quote that really struck me as an essential truth:

Creating healthy boundaries leads to feeling safe, loved, calm, and respected. They are an indication of how you allow people to show up for you and how you show up for others.

One thing that she discusses is the need to get used to setting boundaries with clear statements, and *not* following up with long explanations. We don’t need explanations for folks to respect our needs.

Don’t Say Too Much Stay away from telling people the who, what, when, where, and how of your boundary. Sure, you can answer one or two questions at the most, but be intentional and succinct when you respond. Remember, people may be trying to figure out a way to change your mind. Try to stick to the original statement as much as possible.

The more we can do this, the more we can communicate that our needs aren’t up for negotiation.

Build relationships with folks who trust you to be a reliable narrator. Set boundaries when folks challenge your needs. If they can’t meet your needs find folks who can. While this is much more complex to do then it is to say, it has made an incredible impact in my life to learn to do this.

Trust Us To Be Reliable Narrators
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