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Lyme Disease Requires a Holistic Approach to Organization

Lyme Disease Requires a Holistic Approach to Organization

Guest Contributor Coach Sue West, Organizing Coach & ADHD Specialist

lyme disease affects the whole family

Lyme disease affects the whole famly

My organizing client had been in treatment for chronic Lyme disease for several months already by the time she figured out that an organizing coach might be able to help. Some days she literally couldn’t get out of bed with her fatigue and joint issues. Lyme disease also comes with cognitive weaknesses.

Because of my memory problems, I was so afraid that I was going to forget something, that I wrote everything down!  When I looked at my list I would just get overwhelmed and discouraged and do nothing.

How could we make her life easier while she dealt with this chronic disease, with its several phases and potentially long term effects? We needed to organize things, thoughts and time differently. I’ll share a few of our tactics here as well as suggested resources. 

Organizing Things to Do, but Differently from Before

My clients with Lyme disease are afraid of forgetting something they need to do, afraid of the unpredictability of the symptoms, afraid of whether physical or cognitive symptoms will be permanent, afraid of letting down families, coworkers, and themselves. It’s not only about remembering things; it goes deeper, which creates stress, anxiety and can hit one’s self-esteem and confidence.

A paper notebook planner was her best solution, rather than technology. She felt it would require less cognitive energy, something to protect and preserve. And while she continued to write down everything, we figured out a color coding scheme to match with how she felt each morning.

Your tip on color coding my to-do list was very helpful, especially on the days I was not feeling well.  When I saw the red/pink highlighted items, I knew that I just needed to focus on those for the day!

She gave herself permission to do less. Her anxiety dropped way down. She focused on her self-care instead of tasks less important than getting herself feeling better.   

Family Meetings

She cut back her work schedule, but there was still managing the household. She began family discussions. We worked out what to talk about and how to talk about it, creating a short checklist of topics, as a safety net.

Topics included: chores, meal planning/shopping, laundry, washing dishes/kitchen cleanup, “stuff” or clutter clean up, schoolwork support, and planning fun times for the weekends.

Many people have a hard time “asking for help.” Instead, we talked about it differently: teaching new life skills to her teenagers, partnering more closely with her husband on household management, learning to rely on others while trying to see it as a gift they wanted to give to her, just as she had done for her family. You don’t know until you ask, do you? 

Simplify Chores

We have to make the systems simple to maintain because I never know what my energy level will be until my feet hit the ground each morning.

She began reading about minimalism, frugality and simplifying life … not to “become a minimalist,” but to see which ideas could be adapted to her life.

We looked at services to hire temporarily, such as occasional pre-made meal services, recycling/trash pickup, a dog walker. And we focused on reorganizing household systems: instead of errands and shopping, she could order online to save her time and energy; she could choose items to put on “hold at store,” so the actual trip could be made by any family member. We figured out “simple meal” recipes for those nights when she’d had a tough day. We culled papers to have less to deal with and and simplified her paper management systems so everyone in the household could use them.

One of her teenagers had a knack and a keen interest in keeping things organized. We paired them up to work together, so she could focus on modeling and teaching one person who might catch on a little faster than the others.

Lyme disease affects our entire life. A chronic issue like this needs sensitivity, reorganization, creative thinking and patience. It takes a holistic organizing approach.

Coach SueAbout Sue

Sue West is an Certified Organizer Coach®, Certified Professional Organizer -Chronic Disorganization®, and an ADHD Specialist.

Please visit her website to learn more.


CDC data tells us that in 2014, 96% of confirmed Lyme disease cases were reported from 14 states, one of which is New Hampshire, my home state and several in the Organizing Maniacs area.

Best websites recommended by clients with Lyme disease:

Tired of Lyme

Lyme Disease: Advocacy, Education, and Research

NPR-NH Infographic about Lyme Disease

Wendy writes about her experience with Lyme Disease at Lessons Learned from the Flock

Cris Sgrott

1 Comment
  • Ellen Delap

    August 4, 2016at10:17 pm Reply

    Lyme disease has become a national issue. I am so glad to learn more here.

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