10 life hacks from people living with myositis

Discover 10 life hacks that people living with myositis say make their everyday lives a little easier

THIS ARTICLE IS ABOUT

Real people living with myositis share the small changes that have helped to make a difference in their daily lives—from at-home adjustments to mobility tools. Explore community-tested life hacks designed to help you move through each day with greater ease and self-compassion.

KEY CONTRIBUTORS*

Dianne

Franco

Marcia

Sandy

Sanjay

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This article is intended for educational purposes only and not as medical advice. It’s important to talk to your doctor regularly about any questions you have, including sharing your symptoms, so they can develop the treatment plan that’s right for you.

Life hacks from the community, for the community

One of the great things about the myositis community is the wealth of tips and tricks that have been developed by people just like you. From simple changes that make daily tasks more manageable to mindset shifts that can help have a positive impact on your mental health, members of the myositis community have become experts in what works for them.

We share this small collection of personal “life hacks” developed by people in the community in the hope that some of them may work for you, too—or inspire you to come up with one of your own.

“Small things can make your home more comfortable and accessible. I’ve found that having a light, portable cushion makes it easier for me to get up from sitting.”
Franco, living with inclusion body myositis (IBM)

Franco found that little changes in his living space could have a big impact on his daily life.

For example, he carries a small cushion with him that makes getting up and down from a seated position more comfortable. Consider if there are any small changes you can think of that might make your living space a little easier for you.

“Having a dog helps me stay active.”
Marcia, living with dermatomyositis (DM)

The combination of movement, fresh air, and connection with her pet helps Marcia support both her body and mind. Walking her dog became a meaningful way to stay active. Short, moderate walks allow muscles to stay gently active, which may help maintain endurance and joint mobility while reducing prolonged stiffness.

“I like to use a stress ball in the morning. It’s a small, easy thing that can help me get my fingers moving.”
Dianne, living with DM

Dianne finds that squeezing and releasing a stress ball engages the small muscles in her hands, fingers, and forearms providing a gentle, low-impact way to encourage muscle activation and maintain grip strength and dexterity. It’s how she likes to start the day.

“I try not to let my disease define me. I am not my myositis, and it is not me.”
Sanjay, living with antisynthetase syndrome (ASyS)

The challenges of life with myositis are real, and it can have a real impact on not only your daily life, but also your sense of self.

Sanjay maintains his sense of self by nurturing his interests, relationships, roles, and goals outside of his myositis diagnosis.

Living with myositis is about finding what works for you, one small step at a time. As you figure out the changes you can make in your life, remember that you don’t have to do it alone—and you don’t have to do it all in one day.

“I try to take advantage of what I can do today.”
Sanjay, living with ASyS

Some days you may feel like all you can do is focus on what you can’t do. For Sanjay, recognizing what is still possible, helps him find fulfillment within a new set of boundaries. For some, the instinct to try to “power through” is very strong—it’s okay to give yourself permission to listen to your body and to act in its best interests.

“I allow myself time to feel difficult emotions, but I try to cap it at 48 hours.”
Franco, living with IBM

Franco intentionally creates emotional boundaries, like giving himself a set period of time to feel and express sadness. He says it helps him acknowledge his feelings while also helping him move through them. This means allowing sadness in but not allowing it to take over. These kinds of practices can help you maintain a balance between emotional awareness and forward momentum in daily life.

“When traveling, I call the airline to request accessible seating. They can seat me closer to the front of the plane and near a bathroom.”
Sandy, living with polymyositis

If you feel able to travel, it’s good to know that under the U.S. Air Carrier Access Act (ACAA), airlines are required to provide reasonable accommodations for travelers with physical limitations.

For Sandy, sitting closer to the front of the plane and asking for assistance during boarding and deplaning are things she has learned she can request when flying. Depending on individual needs, passengers can also request help with mobility assistance in the airport, pre-boarding, and support with stowing carry-on items that might be difficult to manage due to muscle weakness or fatigue.

“I don’t hold back from using my handicap placard to save my energy.”
Sandy, living with polymyositis

The muscle weakness associated with myositis can make daily activities challenging. For Sandy, having a handicap placard changes how she approaches outings and errands. If you’re interested in learning more about eligibility, you can visit your state’s Department of Motor Vehicles website for information about the application process.

Remember, these accommodations and laws were written to help you.

“Accessible clothing has been really helpful to me when I get IV treatments.”
Marcia, living with DM

For her ongoing IV treatments, Marcia began thinking more intentionally about how she prepares for each appointment.

She explored adaptive clothing and made it part of her infusion-day routine. Over time, it became one of several practical choices she considers before each of her care visits.

If you think adaptive clothing might make IV treatment easier for you, just enter the term “adaptive clothing” into your internet search engine to find plenty of good options that might work.

“I started to wear UPF clothing options to help block the sun. Sometimes sunblock is not enough.”
Marcia, living with DM

Marcia likes to wear Ultraviolet Protection Factor (UPF) clothing because it offers consistent, broad-spectrum coverage that doesn’t wash off or wear away with sweat. Wearing UPF shirts, long sleeves, wide-brimmed hats, or other protective layers can help preserve skin health and minimize irritation—an important consideration in long-term management of myositis and other conditions where sun sensitivity or inflammation may be a concern.

If you think UPF clothing might help you, think about typing “UPF clothing” in your internet search engine to see what options are out there for you.

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