5 Ways to Thrive When You Have Mobility Issues
Mobility issues, whether from a chronic disease or otherwise, can range from occasional balance difficulty to needing to use a wheelchair. When your mobility is affected, it can drastically change your world. Around 1 in 10 American adults has a disability that affects their ability to walk, according to the U.S. Centers for Disease Control and Prevention. And when you begin to slow down or notice certain activities or locations aren’t accessible to you, your social life, self-esteem, and mood can suffer, too.
“My diagnosis and mobility issues affect my life by limiting what I can do on a daily basis,” says Teresa M. Stallone, 46, a Chicago-based family caregiver and patient advocate with psoriatic arthritis and epilepsy.
“Everyday tasks, such as household chores, showering, grocery shopping, and even going on walks for exercise and to clear my mind require me to break down what will take up the most energy for that task and how much will be left over for the next one.”
Mobility limitations from a chronic condition can certainly interfere with daily life. If you need to use adaptive equipment to help you get around, that’s going to open up more possibilities for you. Teresa says she uses a mobility aid to help her remain independent.
Whitney Weldon, a 29-year-old in New York City with a rare genetic condition called fibrodysplasia ossificans progressiva, which causes connective tissue to transform into bone, feels the same way about her wheelchair. “Being in a wheelchair has made it easier for me to keep up with my friends and neighbors,” she says. “My wheelchair gives me freedom that I never thought was possible.”
But unfortunately, not every place you want to go is accessible—that’s where self-advocacy and a toolkit of handy tips and tools can help. Learn how to better cope with mobility issues from a chronic disease with hard-earned advice from people with a range of physical challenges.
1. Seek Resources for People with Disabilities
If you tend to think you can manage mobility problems from your chronic condition on your own, you might have yet to consider support systems you could benefit from. Renee Uitto, a 50-year-old in Kalamazoo, Michigan, was first diagnosed with cerebral palsy, a disability that affects her ability to move and keep her posture and balance, when she was 9 months old. She recommends looking into a transportation service in your community.
“The fare is usually reasonable, running anywhere from $2 to $4,” she says. Just be sure to think ahead—you generally have to schedule rides about one to two weeks beforehand, she notes.
Whitney, who’s in the middle of a job search, also suggests looking for job listing websites that keep your needs in mind. Inclusively and Chronically Capable, for example, provide listings for employers who focus on individuals with limitations by offering flexible work opportunities. You could also benefit from services for job training, affordable housing, healthcare, education, and legal resources, among many others.
2. Find Mentorship and Therapy for Emotional Support
If you’re struggling to accept new limitations or battling feelings of anxiety over how others might perceive your disability, it’s a good idea to connect with a mentor, therapist, or support group to help you navigate the emotional side of mobility issues.
Whitney, for example, grew up with the same classmates from kindergarten through high school, and they witnessed her transition to a wheelchair firsthand. But when she went off to college at Georgetown University, she felt different for the first time and struggled to adjust and make friends. “The support of a therapist and mentorship at the academic resource center helped me grow into the woman I am now,” she says.
Teresa agrees that social support is essential, in person and/or online. She attends weekly therapy sessions as well as a regular Twitter chat called #SpoonieChat for people living with chronic illness. “Online support from others living with autoimmune disease helps me cope,” she says.
3. Widen Your Social Circle and Ask for Help
Whitney says being an outgoing person has helped her feel more confident in her chair and to better navigate city living. In college, she forced herself to join a women’s social club and take summer classes to build up a community like the one she had at home.
“I started inviting new friends to my dorm and apartment for small cocktail parties to help them be at ease with me and see me,” she says. Now, these friends help her call ahead before they go out to ensure venues are truly accessible for her.
Learning to ask for help from acquaintances or people you don’t know takes practice, but there’s no shame in asking for assistance with your mobility issues, says Teresa. Case in point: the grocery store. “If I cannot reach something on a shelf, I ask a store employee,” she says. “I’ve also asked for help carrying the bags out.”
As you become more friendly with store employees, neighbors, drivers, door attendants, mail delivery workers, and others, your confidence and built-in support system is likely to grow.
4. Use Technology to Your Advantage
Numerous online services, gadgets, and tools are irreplaceable when you’re living with mobility issues from chronic disease. And with COVID-19, many new changes are actually wonderful accessibility tools, says Angie Ebba, a 41-year-old with ankylosing spondylitis, a form of arthritis that stiffens the spine.
“For example, I can now access the vast majority of my medical appointments online, which I do,” she says. She also finds low-impact, seated workouts on Joyn (an app that provides free body-inclusive movement classes) and lets a robot vacuum do the sweeping, since this was the most painful chore for her.
Whitney also says there are numerous virtual services she couldn’t live without, many of which are easily accessible through apps. A few of her favorites? Instacart for grocery delivery; DoorDash, Seamless, and Uber Eats for restaurant delivery; Glamsquad for at-home hair, makeup, and manicures; and OpenTable and Resy for reservations (with “wheelchair guest” added to the notes section).
Whitney has also turned her residence into a smart home. She says she has Amazon Alexa devices in all rooms, and her light switches and AC are iPhone-accessible via Lutron and FriedrichGo, so she can just tell Alexa to turn off lights or adjust the temperature.
5. Find New Hobbies (or Ways to Enjoy Your Old Ones)
Damian Birkel, 66, founder of the nonprofit Professionals in Transition, in Winston-Salem, North Carolina, says the hardest part of living with chronic pain from stenosis (narrowing of the spine) and scoliosis (curving of the spine) has been having to say goodbye to so many activities that he previously enjoyed, including lawn work, jogging, and skiing. His fix has been to come up with new ways to fill his time. “I have become a voracious reader and have taught myself many new skills,” he says.
For her mental health, Angie says she’s had to accept that sometimes she has to push a bit beyond the physical limits of her chronic condition to do the things she loves. This is where accommodations come in.
To reap the feel-good benefits of dancing while minimizing pain, she uses a mobility aid. So she can continue to go camping, she rents a cabin or yurt, tries to get as much rest as possible the previous day, and leaves her calendar clear for a few days afterward so she can recuperate.
“While for some that may seem like too much, for me it is completely worth the joy I feel,” Angie says.
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