How to Live and Cope With an Invisible Disability

Navigating the world with a less obvious or visible disability often means standing up for yourself, educating others, and learning in the process. The world was not made for disabled people, and when your disability is not as visible, you not only experience ableism and struggle to adjust, you have to do so while constantly having to explain your disability to those around you.

If you’re new to life with an invisible disability, or if you’re in a situation where your symptoms are changing, here are some tips on how to deal with some of the more difficult things you might encounter.

How to find mental health support

    “My first recommendation, which I wish someone would have told me 8 years ago, is seek psychological support,” said Kimberly Warner, Founder and Director of Unfixed Media. Warner is a patient with mal de debarquement syndrome, a rare neurological disorder. “It’s really challenging to live in a body that doesn’t work like everyone else’s bodies, and it’s challenging to live in a world that doesn’t recognize that you have problems.”

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    Having a good therapist to talk to about your disability can be life changing, especially if you don’t have anyone in your life with a similar disability or chronic illness. It’s incredibly valuable to have someone who will listen to your experiences and offer you tools to communicate effectively. “They can give us tools to talk to our own bodies in a more kind and compassionate way,” says Warner.

    Your first step might be to look for a therapist or licensed mental health professional who either specializes in working with patients with chronic illnesses and disabilities or has experienced a disability themselves. databases such as psychology today, TherapyTribe, Zencareand TherapyDen could be good starting points.

    Keep this in mind as you decide if a psychotherapist is right for you you can interview them and ask them questions about their specialties and expertise, how they prefer to work with clients, their typical style of therapy, and anything else you might want to know. It’s absolutely fine to let a therapist know if they’re not right for you and to keep looking until you find one that’s right for you.

    How to request accommodation at work

      If you have a disability, you may need housing to do your work. I first asked for accommodation in 2017 when I realized I had to work from home due to symptoms of my genetic connective tissue disorder, Ehlers-Danlos Syndrome. EDS often causes me pain and extreme fatigue, and working from home in a comfortable home office environment designed for my body is much less stressful and easier to navigate. Working from home allows me to adapt my environment to my needs, which means working from the couch with heating pads one day or setting up a home office with a standing desk another day.

      If you know you need accommodation, where do you start? “If it’s a larger organization, you should start with Human Resources,” suggests Jess Stainbrook, executive director of the Invisible Disabilities® Association. “Approach gently to the person in charge of your space to move forward with what you are trying to accomplish and how.”

      Stainbrook recommends making sure you’ve gathered evidence that you can still do your job effectively. If you can still get the job done but need housing to do it, then you’re set for success and are less likely to be discriminated against or told no when you contact Human Resources with your request.

      It is helpful for speaking to your medical providers as early as possible to ensure your service providers are aware they may need to sign papers or provide paperwork to your workplace for placement. Each workplace differs in what they may request or require in order to approve a lodging, but it’s helpful to know which medical providers have the information you may need and give them a lead so they’re ready to retrieve this information.

      How to react when someone tells you not to use a priority seat

      If, like me, you use public transport frequently, you will probably find yourself in a situation where you worry about being asked if you use an accessible seat for disabled people. I haven’t been asked why I sit in the accessible seat on the train, but I don’t usually take the train at peak times either because I don’t need it to get to work.

      Stainbrook says that’s why The Invisible Disabilities® Association developed the National Disability ID Card program was for situations like this: hoping that with a simple card a person could recognize that they have a disability and need to use something like a priority seat or parking space. Stainbrook explains that the Invisible Disabilities® Association is still working on the public education and awareness needed for a successful program like this one – if you think of something like a medical alert bracelet, these weren’t always as well known as they are today. In a few years, it’s possible that an ID card could be more mainstream and used as an instant identifier for those who wish to use it.

      Meanwhile, Warner recommends wearing a t-shirt or other disability cue if you don’t want to raise issues directly. She loves the shirts sold by This thing they called recoverywhich might make someone think twice before bothering you about using an accessible seat when you’re wearing a shirt that says “Everything hurts and I feel like death.”

      Wendy Lu, who suffers from bilateral vocal cord paralysis, GERD, migraines and anxiety, suggests taking an accessible seat without an outward explanation. She says, “If someone says something like, ‘Why do you take this seat? You’re not disabled,” I’d probably just reply, “I’m disabled,” and leave it at that. Remember, they are not entitled to your entire life story and you do not have to justify yourself and your needs to strangers.”

      How to get a barrier-free parking sticker

      How one get a disabled parking permit will likely vary from state to state, so be sure to check your state’s requirements. As a rule, the motor vehicle registration office (DMV) or motor vehicle register (RMV) runs the program for handicapped parking permits. Each state will have its own list of what types of conditions qualify for a disabled parking permit, how to apply for one, and what evidence – if any – of your condition you must provide.

      In some states, obtaining a disabled parking permit automatically gives you access to other disabled options. in the Massachusettswhere I live, if you have a permanent parking sign, you can too apply for a Transportation Access Pass for the MBTA, which grants you discounted train and bus fares. After getting my disabled parking permit for driving, I applied for a TAP card as I both drive and use the subway to get around. In Massachusetts also drivers with a handicapped parking sign no need to pay parking meter fees.

      How to ask your friends and family for support

      There is nothing like supportive family members when you have a disability. My friends and select family are incredibly reassuring when I need to vent, and they’ve also helped me speak up for myself when I needed to do it at work, in public spaces, at events, at doctor’s appointments, and while traveling.

      Warner recommends offering resources to those close to you — you could give them books, articles, podcasts, TikToks, YouTube videos, etc., all with the thought of letting them know more about your disability. These resources can be a combination of medical resources such as B. 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 to the Autistic Women and Nonbinary Network (AWN) and keep loved ones from referring to resources created by Autism Speaks, which is known for its harmful attitude on autistic people. I often point out the Ehlers-Danlos syndrome Annie Segarra or Jessica Kellgren-Fozard. For postural orthostatic tachycardia syndrome, which is often comorbid with EDS, I often recommend people read the writings of Lilli Lainoff, author of One for all.

      When we ask for support, it helps those around us to understand what we are experiencing and how our disabilities affect us in our everyday lives. “We’re saying no to engagements or canceling engagements more often than we used to,” says Warner. She says we should “tell our friends who care about us that it’s nothing personal.” It can be invaluable when they know there may be changes in our social and professional lives so they can better support us.

      Back to the We Are Not Invisible project

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