Time management is the hardest part of living with chronic illness for me

Living with rare and chronic illnesses can be complicated, stressful, and draining. There are the obvious reasons, such as feeling sick, undergoing treatment, dealing with costs, and managing complications. But something I didn’t expect was time management issues, with deadlines becoming increasingly difficult to meet.

The world revolves around time. Work responsibilities, school schedules, bills, doctor appointments, and travel all run on tight schedules. Missing deadlines can affect your income and grades in school, incur late fees, and even cause you to miss flights or appointments.

This has become something I struggle with daily. As a child, I was diagnosed with hypermobile Ehlers-Danlos syndrome and lupus. But back then, my mother managed my life. And as long as her mental health was in good shape, we were always on time and sometimes even early to events.

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But in 2018, after a bout of extreme fatigue, nosebleeds, unexplained bruising, and abnormal blood work, I was diagnosed with immune thrombocytopenia. Basically, my immune system was attacking my platelets. I was a single mom at the time who owned and operated a large business out of a 7,000-square-foot facility. We were late to everything nearly every day. Getting two wild toddlers dressed, fed, and out the door each morning was already a challenge. But then extreme fatigue was added to the mix.

Feeling exhausted all the time, no matter how much sleep I got, was a nightmare of its own. But being late to things was very stressful, and the more stressed I became, the more it affected my immune system, and the more intense my symptoms got. This still rings true today.

Then, in 2020, I nearly died from multiorgan failure and complications from another rare disease called atypical hemolytic uremic syndrome. This was a life-changing event. Permanent organ damage, two dozen comorbidities, and biweekly treatment have made every single day of my life a struggle. And besides my body, my time management has suffered the most.

Compounding stress

I want to be on time for things. I need to be on time. I try desperately to be punctual. But living with chronic illness, fatigue, and stress constantly makes this an issue for me.

I know part of it stems from executive dysfunction, which gets worse for me when I’m stressed. Executive dysfunction makes self-management — things like task initiation, time management, focus, and follow-through — difficult. For me, it’s a result of having bipolar disorder and attention-deficit/hyperactivity disorder. I self-manage these issues most of the time, but it’s harder when I’m sick or stressed.

This causes a lot of task paralysis, time blindness, and emotional fatigue, and I often need to change plans or make excuses. It can come off as laziness or appear as though I don’t care about something important, even though that’s not true at all. Being exhausted and drained just makes this worse.

You would think the worst part of living with chronic illness is needing infusions for the rest of my life, having permanent organ damage that affects me daily, or even just feeling like crap all the time. But no, stressing and worrying about deadlines and time management is my biggest issue.

It’s something I deal with multiple times a day: bus drop-offs and school for my kids, work and school assignment deadlines, cooking meals, doctor appointments, grocery shopping, extreme couponing deadlines, and even occasional travel.

Tight scheduling, understanding and accepting my limits, and writing everything down are crucial. Being able to see tasks and time frames written down helps me with not only time management and time blindness, but also energy management. I also set multiple alarms on my phone each day as task reminders. Implementing these systems in our household is slowly reshaping how I manage time, which makes me hopeful for the future.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.