SMA advocates share practical tips for work, dating, and travel
Managing a career, dating, and air travel for individuals with spinal muscular atrophy (SMA) comes down to three key tools: open communication, smart energy management, and proactive planning.
These strategies were discussed during a recent webinar hosted by SMA News Today, where advocates living with the rare genetic condition shared practical advice for daily life beyond the clinic. Titled “Rarely Speaking: SMA Beyond the Clinic (Real patient voices. Real lived experience. Zero clinical lecture),” the free online event focused on nonclinical aspects of daily life with SMA.
The webinar was moderated by Kevin Schaefer, community editorial manager at Bionews, the parent company of SMA News Today.
“While clinical care is crucial, there are so many other components of living with SMA,” said Schaefer, who has SMA type 2 and writes the column Embracing My Inner Alien on SMA News Today.
Alongside Schaefer, the panel featured two other advocates living with SMA: Mindy Henderson, vice president of disability outreach and empowerment at the Muscular Dystrophy Association (MDA), and Maylan Chavez, a Biogen influencer, Cure SMA chapter lead, and host of the Access Granted podcast. The panel also included Albert Freedman, PhD, a psychologist, author, and rare disease consultant who spent more than two decades caring for his late son, Jack, who had SMA.
SMA is a genetic disease that affects the nerve cells responsible for controlling movement. Symptoms include muscle weakness and fatigue. People living with SMA often need wheelchairs or other adaptive equipment to get around, and many rely on caregivers for day-to-day needs.
Careers and energy management in the workplace
The first part of the webinar focused on how people with SMA can achieve success in the workplace. In particular, the discussion centered on strategies for coping with fatigue, a symptom that can make it hard to get through a workday.
Henderson and Chavez both said that proactive planning is critical for managing fatigue. Henderson compared her scheduling routine to a game of Tetris, carefully arranging tasks so that everything fits within a limited amount of time and energy.
“I’ve learned that conserving my energy isn’t about lowering the bar; it’s about protecting the energy that I need to be able to perform at the level that I want to … What goes into that is a lot of prioritization and figuring out where I can spend my energy where I can add the most value,” said Henderson, who is editor-in-chief of MDA’s Quest Media.
“Inevitably, some days are busier than others … but I try to approach my work life with as much intention as I can about what I want to have accomplished at the end of the day … and then I try to structure my workdays to tackle the most important components and the highest-impact activities,” she added.
Panelists also emphasized the value of built-in downtime.
“It’s really important just to give yourself room to rest, first and foremost. And then, secondly, to do things in a timeframe that is comfortable for you and effective towards your needs,” Chavez said. “If we push ourselves too much, then we burn out, and then we’re not creating [and] we’re not doing what we love.”
Even with the best time management, most people with SMA will require some workplace accommodations. Henderson reflected that at the start of her career, she avoided asking for any kind of accommodation at work for fear of judgment. She has since changed her mindset by framing accommodations as simply steps to enable success.
“The accommodation is tactical … It can be a check box that you need to tick in order to be able to do your job as successfully as possible. And that’s the way that I really like to frame the conversations now,” Henderson said. “I don’t think accommodations are a reduction in expectations … It’s the infrastructure that allows someone to meet those expectations.”
Freedman noted that when asking for workplace accommodations, it helps to be specific about exactly what changes would be helpful. He said that most people aren’t deeply familiar with SMA, so it’s important to explain the pertinent information to avoid assumptions or unhelpful responses.
“If you come in with something too vague, the employer doesn’t know how to respond … The more concrete you are about the functional impact, the harder it is for an employer to offer a more generic workaround that may or may not suit your needs,” Freedman said.
He gave an example: “Saying, ‘I have SMA and I get tired,’ is very different from saying, ‘I need a 20-minute break after back-to-back meetings because my respiratory muscle fatigue compounds across the day and here’s what that looks like and feels like.’ ”
If explaining SMA feels intimidating, remember that communication is a skill you refine over time, not a personal shortcoming.
Romance and navigating disclosure in dating
After discussing the workplace, the panel discussion turned to romance. In the modern era of dating apps where many relationships begin online, people with SMA often wonder when it’s best to disclose their condition. Chavez said she thinks it’s best to be upfront about her condition, such as using profile pictures that don’t hide the fact that she uses a wheelchair.
“If you’re in a wheelchair, if you have tubing of any kind, if you have assistive devices — if you have anything — you deserve to be open, completely yourself … and always tell your potential dating partner all the things that you utilize, because [these devices] help you live,” Chavez said. She noted that assistive devices are “parts of you and they help you be who you are … and there’s no shame in that whatsoever.”
Henderson, who has been married for more than two decades to someone she met on a dating site, agreed that disclosing early is best.
“I wasn’t interested in having my time wasted,” she said. “I put photos of myself in my wheelchair on my profile, and figured that was gonna be its own tool for weeding out the wrong people. [And] I did find the right person.”
Schaefer noted that talking about SMA on a date can feel daunting, but, like any skill, it gets easier with practice. “If explaining SMA feels intimidating, remember that communication is a skill you refine over time, not a personal shortcoming,” he said.
If you want to travel, do it anyway, wheelchair damage be damned. I would rather go through that experience than miss out on something that I really want to do.
Travel logistics and protecting mobility equipment
The final portion of the webinar focused on travel. The panelists all agreed that forethought and planning are key to success when traveling with SMA.
“If work is about energy management and then dating is about communication, travel and independence are about raw logistics,” Schaefer said.
When flying by airplane, Chavez said her biggest fear is that her wheelchair might get damaged. She’s had bad experiences in the past, including arriving in Chicago at 2 a.m. after a red-eye flight to find her wheelchair had been totaled.
Despite these challenges, people with SMA should feel empowered to travel if they want to, she said.
“If you want to travel, do it anyway, wheelchair damage be damned,” she said. “I would rather go through that experience than not go through that experience and miss out on something that I really want to do.”
She noted that conditions have improved recently due to continued advocacy. “That’s not to say that they won’t damage your chair, but at least they’ll be more willing to work with you on how to fix it. I’ve had occasions where… something was kind of damaged, and they just called a technician up and helped me fix it.”
Henderson shared a few tips she uses to minimize the risk of wheelchair damage at the airport. First, she places visual signals on the wheelchair, such as bubble wrap around the delicate joysticks or signs in bright red letters indicating that certain components of the wheelchair are very expensive to replace. She also makes a point to ask to speak with the people who will be handling her chair.
“At the gate when I check into my flight, I do borderline demand … in a charming, friendly way, to speak with the person from the ground crew that’s going to handle my chair so that I can tell them the dos and don’ts,” Henderson said.
The panelists also noted that if people with SMA experience wheelchair damage during air travel, it’s crucial not to leave the airport until a claim has been filed with the airline. These claims can help cover costs for repair or replacement.
The post SMA advocates share practical tips for work, dating, and travel appeared first on SMA News Today.
