When Life Happens: Being Vulnerable About Your Reality As A Research Partner
Rae Martens, FER Training Program Knowledge Broker
Dropping everything at a moment’s notice was an effortless reflex when a medical emergency happened at my house. My son was medically complex, and you planned life with a “go-bag” in the closet. This bag was filled with enough supplies to get you through night one of an inpatient stay in hospital.
Family engagement is something that occurs due to the long-standing relationship human being’s have with health and healthcare. It shares the fingerprints of lived experience of both from the good to the potentially traumatic. We don’t give the nature of this circumstance its due sometimes though. Not everyone for example contemplates that people with lived experience bring these experiences into partnership spaces; therefore we need to ensure these spaces are psychologically safe. Today though, I’d like to talk about the act of self-forgiveness and compassion when we’re caught up in a stressful life moment. Let’s take it back though to this experience of heading to the emergency room.
Not everyone in a patient or caregiver’s life acts hospitably towards the realities that they face. People miss opportunities to participate in the world and their community for a variety of reasons. Not everyone understands what this means or why things are as complex as they are. I remember once being in the Infectious Disease Clinic and my son getting IV antibiotics. My spouse is out in the hallway arguing with someone on the phone who felt this was the moment that they needed to share their frustration that we couldn’t attend to that person’s specific needs. Sometimes these circumstances cause you to be self-protective, you sometimes feel like you can be enough to everybody.
Then you find yourself doing something you find meaningful, like being a partner on a research team. The reality of life dropping at a moment’s notice still remains. How do you begin to communicate this without risking feeling like you’re somehow letting people down? Let’s unpack this a bit.
You are there because of your lived experience. I suspect that they have a pretty reasonable understanding of the realities of your life. That’s why they asked you to be a research partner! ❤️ The question isn’t whether or not they’ll be accepting of those realities. (Though that is important too.) It’s important to start the conversation early about what sorts of accommodations you may need.
Here are a few things to talk about to get the conversation started, or consider as you make these plans:
Practice the Art of Self-Forgiveness: Your reality is not a burden on others and neither are you. You don’t need to feel fully apologetic for expressing the need to step away if life complexities arise.
Consider A Plan For How To Best Communicate If You Have To Rush To the Hospital: That could be anything from a WhatsApp channel as a quicker way to stay in contact, to ensuring you can send an email to alert people to your schedule change.
Ask For Help If You Can’t Make A Deadline: The need to pivot sometimes happens in research partnerships. It’s ok. Just be sure to reach out so people can plan accordingly.
Tips For Researchers
Have An Early Conversation About Needs And Accommodations: Have the strategy some place handy to be mobilized and ready should you need it.
Check In Occasionally: Have no expectation for a reply, but send your best wishes and support. That builds trust and recognizes a partner’s reality.
Consider What is Supportive Language In These Moments: People don’t need life advice, they just need to be heard and have someone to sit with them in those moments.
Life has a way of being unsteady. When we plan for that potential, we plan for compassion and trust building.