How to Navigate the World When You Have an Invisible Disability
Navigating the world with a less immediately obvious or visible disability often means advocating for yourself, educating others, and learning as you go. The world wasn’t designed for disabled people, and when your disability isn’t as visible, you’re not only experiencing ableism and fighting for accommodations, but you’re doing so while having to constantly explain your disability to those around you.
This story is part of Prevention’s We Are Not Invisible project, a series of personal and informative stories that shed light on those with Invisible Disabilities in honor of Invisible Disabilities Week 2022.
If you’re new to life with an invisible disability or you’re in a position where your symptoms are changing, here are some tips for navigating some of the more challenging things you might come up against.
How to find mental health support
“My first recommendation, which I wish someone had told me 8 years ago, is seek mental health support,” says Kimberly Warner, the founder and director of Unfixed Media. Warner is a patient of Mal de Débarquement Syndrome, a rare neurological disorder. “It’s really challenging living in a body that doesn’t work the way everyone else’s bodies do, and it's challenging living in a world that doesn’t acknowledge that you’re struggling.”
Having a good therapist who you can talk to about your disability can be life-changing, especially if you don’t have anyone else in your life with a similar disability or chronic illness. It’s incredibly validating to have someone listen to your experiences and offer you tools for effective communication. “They can give us tools to speak with our own bodies in a kinder, more compassionate way,” says Warner.
Your first step might be to look for a therapist or licensed mental health expert who either has a specialty in working with patients who have chronic illnesses and disabilities, or one who personally experiences a disability themselves. Databases such as Psychology Today, TherapyTribe, Zencare, and TherapyDen might be good places to start.
While you’re deciding if a mental health professional is the right fit for you, remember that you can interview them and ask them questions about their specialties and expertises, how they prefer to work with clients, their typical therapy style, and anything else that you might want to know. It’s absolutely okay to let a therapist know if they aren’t the right fit for you and to keep looking until you find one who is.
How to request accommodations at work
When you’ve got a disability, you may or may not need accommodations to do your job. I experienced asking for accommodations for the first time in 2017, when I realized I needed the ability to work from home due to symptoms of the genetic connective tissue disorder I have, Ehlers-Danlos syndrome. EDS often causes me to be in pain and extreme fatigue, and working from home in a comfortable home office setting that is designed for my body is a lot less exhausting and easier to navigate. When I work from home, I’m able to cater my environment to my needs, which might mean working from the couch with a heating pad one day or setting up a home office with a standing desk another.
If you know you need accommodations, where do you start? “If it’s a larger corporation, you want to start with HR,” suggests Jess Stainbrook, executive director of the Invisible Disabilities® Association. “Gently approach the person who is in charge of your area to move forward with what you’re trying to accomplish and how.”
Stainbrook’s advice is to make sure that you have accumulated some evidence that you can still perform your job effectively. If you can still get the job done but you need an accommodation to do so, then you’ve set yourself up for success and are less likely to be discriminated against or told no when you approach HR with your request.
It’s helpful to begin talking to your medical providers as early as possible to make sure that your providers know they might need to sign paperwork or provide documentation to your workplace for the accommodation. Every workplace is different in what they might ask for or require in order to approve an accommodation, but it helps to know which medical providers have the information you might need and to give them a heads up so they’re ready to pull that information for you.
How to respond if someone says you shouldn’t be using a disabled seat
If you’re a frequent user of public transportation like I am, you’ll probably run into a situation where you’re worried that you might be asked about your use of an accessible seat for disabled people. I haven’t yet been asked why I’m sitting down in the accessible seat on the train, but I also don’t usually take the train at peak rush hours because I don’t need to use it to get to work.
Stainbrook says that the reason the Invisible Disabilities® Association designed the National Disability ID Card program was for situations just like this: In the hopes that, with a simple card, a person could identify that they have a disability and need to use something such as a disabled seat or parking spot. Stainbrook explains that the Invisible Disabilities® Association is still working on the public education and awareness needed for a program like this to be successful—if you think about something like a medical alert bracelet, these weren’t always as widely known as they are now. In a few years, it’s possible that an ID card might be more mainstream and could be used as an immediate marker for those who want to use it.
In the meantime, Warner recommends wearing T-shirts or other markers of disability if you don’t want to have to address questions directly. She loves the shirts sold by This Thing They Called Recovery, which could make someone think twice before bothering you about using an accessible seat if you’re wearing a shirt that reads, ‘Everything hurts & I feel like death.’
Wendy Lu, who has bilateral vocal cord paralysis, GERD, migraines, and anxiety, suggests taking an accessible seat without any necessary outward-facing explanation. She says, “If someone says something like, ‘Why are you taking up that seat? You aren’t disabled,’ I’d probably just respond by saying, ‘I am disabled,’ and leave it at that. Remember, they aren’t entitled to your whole life story and you don’t have to justify yourself or your needs to strangers.”
How to get an accessible parking placard
How to get a disability parking placard is likely going to vary from state to state, so you’ll want to learn about the requirements in your state. In general, the Department of Motor Vehicles (DMV) or Registry of Motor Vehicles (RMV) will run the program for disability parking placards. Each state is going to have its own list of what types of conditions qualify for a disability parking placard, how you will apply, and what—if any—proof of your condition you will need to supply.
In some states, getting a disability parking placard automatically offers you access to other opportunities for disabled people. In Massachusetts, where I live, if you have a permanent parking placard, you can also apply for a Transportation Access Pass for the MBTA, which grants you reduced fares for trains and buses. After I received my disability parking placard for driving, I submitted an application for a TAP card since I both drive and use the subway to get around. In Massachusetts, drivers with a disabled parking placard also do not need to pay parking meter fees.
How to ask for support from your friends and family
There’s nothing like having supportive loved ones when you have a disability. My friends and chosen family are incredibly validating when I need to vent, and they have also helped me advocate for myself when I have needed to at work, in public spaces, at events, at medical appointments, and while traveling.
Warner recommends offering resources to those who are close to you—you might give them books, articles, podcasts, TikToks, YouTube videos, and so on, all from the mindset of wanting them to learn more about your disability. These resources could be a combination of medical resources, such as information about your medical condition and diagnosis, along with resources that show what it’s like to actually live with your disability. Unfixed Media has a wealth of videos that can be helpful resources on a variety of disabilities and chronic illnesses. As an autistic person, I often refer people to the Autistic Women and Nonbinary Network (AWN) and discourage my loved ones from referring to any resources created by Autism Speaks, which is known for its harmful stance on autistic people. For Ehlers-Danlos syndrome, I’m often pointing people to Annie Segarra or Jessica Kellgren-Fozard. For Postural Orthostatic Tachycardia Syndrome, which is commonly co-morbid with EDS, I often recommend people read the writing of Lillie Lainoff, author of One for All.
In asking for support, it’s helpful for those close to us to understand what we’re experiencing and how our disabilities affect us on a day-to-day basis. “We often say no to engagements more, or we cancel more often than we used to,” says Warner. She says that we should “tell our friends, the ones we care about, that it’s not personal.” It can be invaluable when the know that there might be changes in how we navigate our social and professional lives so that they can better support us.
Back to the We Are Not Invisible project
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