3 Ways I Combat Burnout

As a person living with a rare and chronic disease, I have much less energy than the average person. Even keeping up with the bare minimum of daily tasks necessary to be a human can be difficult when living with a rare disease. If I expend too much energy for too long, this can result in burnout.

For me, burnout results in worsened symptoms. As a person living with narcolepsy, worsened symptoms for me look like an increase in excessive daytime sleepiness resulting in "sleep attacks," sleep paralysis, insomnia and broken sleep at night, and paralysis resulting from intense emotions (called "cataplexy").

The consequences of pushing too hard

It is important for me to catch burnout in the early stages. When I notice my symptoms are increasing, I know it's time to take it easy for a bit. If I continue to push my energy levels beyond capacity, I can end up with severe burnout or getting sick from a secondary illness.

For example, the last bad burnout I had, I ended up not resting enough, doing too much, and getting shingles for 4 whole months!

3 ways I combat burnout with a rare disease

When it comes to burnout, prevention is preferred. However, it is not always possible to avoid a symptom flare when you are living with a rare disease. So for these occasions, here are a few ways I combat burnout:

1. Rest up

Notably, resting is the most difficult step to combatting burnout. It is also the most important step! Quality sleep is vital for health and wellness. Within the deep stages of sleep, your body resupplies cells, repairs injuries, and reinforces your immune system.¹

As a person with narcolepsy, I rarely get deep sleep due to my brain's reduced ability to regulate sleep and wake cycles. Therefore, getting more sleep than the normal person is necessary for me. Everyone needs deep sleep in order to maintain health, but it is especially important for those of us with rare and chronic diseases.

2. Food is fuel

It can be difficult to get access to nutritious foods as a chronically ill person. Grocery shopping takes up a lot of energy and executive functioning. For this reason, I keep around lots of frozen and canned vegetables and fruits for those days when I am unable to prepare "real" meals.

It's important for me to make sure I am fueling my body during flares. Nutritious foods help to fuel my recovery.

3. Tell others

When I am in a flare, the last thing I need is people in my life tempting me to go out and explore the world with them. Therefore, I find it important to inform close friends and partners when I am experiencing burnout. This way, they know that I do want to spend quality time with them but am simply unable to do so.

One perk of telling my community about my burnout is that I am better able to get my needs met with communication. For example, friends or partners might plan around my symptoms, asking to come over to my place rather than go out (depending on the severity of my symptoms, of course).

How do you combat burnout while living with a rare disease? Feel free to share in the comments!