The Mighty Logo

How I Live 'With,' Not 'in' My Chronic Illnesses

The most helpful emails in health
Browse our free newsletters

Editor's Note

Join The Mighty’s Spoonie Life Hacks group to get tips for tackling everyday tasks from people living with chronic illnesses — or to share your own hacks!

I live with a chronic illness. I live with two chronic illnesses, actually. I live with mal de debarquement syndrome (a rare disease that leaves you feeling in constant motion) and Meniere’s disease. I live with my chronic illnesses, but I don’t live in my chronic illnesses.

To live in means to permanently reside with something. To live with means to accept or tolerate something. I make this differentiation between the two because while I may have two chronic illnesses, they do not have to consume my every day and my every thought.

In saying this, I understand that my illnesses are always with me. There is not a second that I feel relief from the motion, the nausea, the brain fog or the chronic pain. Some days I’m “out to sea” and the rocking is so intense that any movement will cause my nausea to take over. These days I reside in my bed and try to find the calm in the sea. These are not the days where I can sit with my symptoms and try to find the calm within them. These are not the days I can walk through the grass barefoot and feel my body literally grounding to ease the rocking.

These out to sea days are also a rarity.

Most of my days, my symptoms are at a 4-5 on a symptom severity scale of one to 10. According to the MdDS Foundation website, my symptoms can be described as the “sensation of rocking/bobbing/swaying is almost imperceptible. Most often noticed while walking but may also be recognized while sitting, standing or lying down. Can usually perform routine daily functions without the need for rest periods. Rocking/bobbing/swaying sensation is almost constant but can function fairly well with occasional rest periods.”

On these days, I choose to navigate life to the best of my ability. I choose to be present with my kids (ride the roller coaster, go kayaking, make up wacky dances and laugh), I choose to serve others, I choose to volunteer, I choose to push myself to try new things (things I may be scared of), and I choose to live with not in my illnesses. And then I enjoy some rest before I take on the next challenge.

Getty image by Maki Shmaki.

Originally published: June 8, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home