About Managing Chronic Illness
Back-To-School With Chronic Illness Part 1
So, over the summer I have been focusing my practice to work with folks with chronic illness. I’ve decided to specialize in this area because I think that there is a need for resources and support for folks experiencing chronic illness in it’s many forms, and I have some lived experience, that could be helpful to share. At the same time, I don’t expect my experience to be anyone else’s experience. I’m sharing some strategies that I think could be helpful based on both my clinical skills and my life. There are many different ways that back-to-school can happen and these two posts can’t address each of those situations. Instead, consider these a jumping off point.
Like preparing for anything, I prefer to start by asking myself some questions to get oriented. Part 1 is going to focus on the questions that I ask myself, and conversations I have with loved ones, so that I can better understand what is important to everyone involved. After that, I begin to think through the typical routine. Part 2 will focus on making the plans. Together these strategies are key for me. I’d love to hear about different ways of planning, or of other things, you think are essential to planning for back-to-school.
Since becoming a parent, I realize that the back-to-school season is not only stressful for the students returning to school and their teachers, but also for families supporting students. The planning required on the parenting end, is different from that as a student. However, just because transitions are inherently stressful, doesn’t mean that the family has to experience it is unpleasant or difficult. Back-to-school can also be exciting and invigorating. Transitioning back-to-school with chronic illness in the family can be that much more involved. However, it can be a great opportunity to talk about how chronic illness impacts family life. Despite my illness and the stress of this season, I have always loved this time of year!
2- Where & What?
I’ve done the “back-to-school” routine with illness for almost 20 years now, in different capacities. With different levels of illness and needs. With different schools. And in different roles. Each scenario has a few nuances, and every year is unique. I now start by thinking about my intentions for the short term- what school, what outcome, and what other things are important? As a Mom with illness supporting kids (without illness) going to school, I also have to think about how their schedule impacts mine, and what that means for my wellness.
Ideas for Reflection for Parents or Young People with Illness
- Past back-to-school Experiences: What worked & what didn’t?
- What is the illness doing? Is it “loud” or “quiet” right now? (*Loud meaning a flare up, unpredictability, or more significant impacts during the day-to-day and *Quiet meaning more stable, less impactful, and more predictable regarding energy, pain, and mobility.)
- What are the priorities: academics, routines, managing illness, coping, starting something new, extracurriculars, social connection?
Sometimes, coping with my illness and simply integrating myself into the school routine- in the middle of a flare or period of intense illness- is the main priority! Knowing where I’m at and figuring out what is most important in the moment, helps me answer the rest of the questions and plan accordingly.
How do you take back-to-school from a stress mess to organized chaos? For me, it means actually making a plan (in case I haven’t mentioned that before.) For me a "Plan" includes thinking about the impact of the small details, the timing/flow, and staying focused on my priorities.
For parents planning the back-to-school transition with the child who has chronic illness, sit down together with a notebook (or iPad) and talk. Things to talk about:
- Hopes & Fears for School
- School & Extracurricular Schedule
- Medical Adherence and Wellness
- Sharing Personal Health Information (how much detail and with whom?)
- Social Planning
- The Little Details (ie: packing the backpack)
This kind of discussion is important at all ages- adjust how you talk to kids based on their maturity & understanding- not whether or not you include them.
During the discussion together, you may not be able to complete all the details of the plan. Conclude your discussion and then come back to the child with a schedule and priority list based on your conversation. Continue to talk about things. You may not be able to do exactly what your child wants. However, taking the time to explain your reasons can help them to understand and accept.
So, that is Part 1 of my planning strategy. These questions are just how I get oriented so that I can plan effectively. Tomorrow I will post the second part of my strategy which revolves around planning and the tools that I find helpful. Share the questions you use to orient yourself- I'd love to learn more about how others do this transition thing!