Why I Cancel Plans Because of My Chronic Illness

They say that tomorrow is another day, but with chronic illness, you are never going to know how you feel day to day. That is why we sometimes have to cancel, reschedule, or just put our hand up and say ‘not today’.

What my day was supposed to be:

-8 AM: DRIVE FROM MY PARENT’S HOUSE IN NEWPORT TO OUR OFFICE IN AT MASSCHALLENGE IN BOSTON

-10 AM: GET TO WORK!

-1 PM: MEETING WITH TUFTS HEALTH PLAN

-2:30 PM: NAP TIME!

-5 PM: INSPIRE FEMALE ENTREPRENEURS AT WENTWORTH INSTITUTE OF TECHNOLOGY!

-6:30- 10 PM: WORK LATE INTO THE NIGHT

The morning commute started out like any other. My Co-Founder, Yousef, drove to Boston while I passed out in the passenger’s seat. Mornings are always tough for me, especially if I have to do an infusion through my PICC line.

Once we arrived at Boston and I tried to get out of the car, I had trouble walking. Everything hurt. I felt like my 83-year-old self… Get my cane people!

Have you had this happen to you?

So what do I do next? Have a meltdown and made Yousef take me home. A whole day was gone.

I took the second nap of the day from 10:30 AM to 2:30 PM and as a result, had to cancel everything. I couldn’t walk, I had trouble with my words. I was confused about where I was. My stomach was doing backflips thanks to the 25 supplements and antibiotics that I am on. My own version of the Walking Dead.

Every time my chronic illness acts up I feel like I am letting people down. My business partners. The people I have to cancel meetings on last minute. And most of all, the people that look up to me.

To all of those who surround people with chronic illness: Please know we are not flaking out, rather we are just listening to our bodies. We can’t move forward without taking a pause.

So thank you to everyone I had to press pause on.

Thank you to my partners for helping me walk up the stairs and taking over my daily tasks and responsibilities on days that I just can’t.

Thank you to my boyfriend for making me food and tucking me in.

And finally, thank you to all of my spoonie friends for understanding what I am going through. Sometimes I feel so alone, but it is having friends like you that keep me going!

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Emily Levy

Levy is an award-winning social impact entrepreneur, disability advocate, and international public speaker. She co-founded Mighty Well, a medical technology startup based on her experience as a patient living with Lyme disease and vascular access devices. Levy has designed and launched six patient wearables. Her original product, PICCPerfect, was given FDA approval as a Class 1 device. In 2022, Emily co-authored the Ultimate Guide to PICCs with AVA to help improve patient outcomes. During the last ten years, she has had three PICCs, an implanted port, and numerous peripheral IVs for various infusion therapies. Under Mighty Well, she has co-created a digital eLearning platform for patients with vascular access. She has published innumerable articles on vascular access and patient advocacy topics. She frequently delivers keynote speeches at local, national, and international conferences on issues related to the patient perspective in health care, home infusion, and patient vascular access care.