Living with a disability can be challenging, but when that disability is invisible to those around you, it not only amplifies daily struggles but complicates your ability to get the support you need. Invisible disabilities such as brain injuries, chronic pain, gastro-intestinal disorders, and mental illness are often overlooked and misunderstood by others. If you live with an invisible disability it might seem ironic that something “unseen” by others can, at times, completely obscure your own view of life and the activities that make it worth living. Thankfully, a disability does not need to be seen to be accommodated; and while it may not always feel like it, that obstructed view best positions you to build up the supports you need to live your best life. Here are 7 ways to create visible supports for your invisible disability.
1. Understand your disability (and your needs)
First and foremost, you need to understand your disability. If it is newly acquired, take time to learn about it. What triggers symptoms? What can you expect for symptom progression throughout the day, and/or over time? Reflect on your specific situation. How do your symptoms progress throughout the day? What barriers do you encounter as you go about your day? What strengths and resources do you have at your disposal? But just as importantly, where do you struggle? What do you need to succeed? The better you understand your own disability and your needs, the better able you will be to identify supports.
2. Build a support network
Don’t go it alone. Despite the support you have from friends and family, there will be times when you need the perspective of others with lived experience. The internet and social networking make joining and consulting these groups incredibly easy. Check out the Invisible Disabilities Association to find disability-specific groups, as well as general invisible disability groups, podcasts, blogs, awareness campaigns, events and so much more. The invisible disability community is large and contains a wealth of knowledge for you to tap into.
3. Assist yourself
Find out what assistive devices exist to help with your disability. New and innovative assistive devices hit the market every day. Ask your healthcare team if they have specific device suggestions or check out evika.io to access an exhaustive database of assistive devices alongside user reviews and clinical guides from trained professionals. A memory aid device like the Boogie Board Jot Pocket allows you to write notes, lists, and reminders and when paired with the free app can be saved, edited and shared. Or a mobility aid like the R900 4-Wheel Walker can help if you struggle with balance or fatigue. There are millions of devices on the market designed to improve, enhance or facilitate function, finding the ones that can help you regain independence are just a conversation, or click away!
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4. Strategize your day
Using strategies like energy conservation and route planning can help you maximize your strengths and resources. Are your symptoms worse in the morning? Plan outings and appointments for the afternoon. Do you get overwhelmed at the grocery store? Organize your shopping list by aisle. Do you require frequent breaks when walking? Bring along a folding cane seat or select routes that include a selection of park benches or places to sit. Take time to mentally prepare yourself for days you know will push your limits and to decompress after particularly stressful moments/interactions, whether planned or unplanned. Mindfulness, yoga, and self-reflection are good to build into your daily routine.
5. Communicate your needs
While you should not feel obligated to disclose any private or personal details about your disability, you DO need to be able to clearly communicate your needs. When possible, it can be helpful to arrange for accommodations in advance. Perhaps that means speaking with your new boss about workplace modifications prior to starting your new job; arranging to have a hotel room located near the elevator; or calling ahead to a restaurant to find out if they can seat you in a quiet area of the dining room or if they have large font menus. It might help to develop a script (or two) that you can use when interacting with strangers or those who may not be aware of your disability. You can also carry or wear an Invisible Disability ID Card that visually identifies you as someone with a disability.
6. Prepare for challenges
The reality is an invisible disability is one that is not immediately noticeable. Whether you live with a brain injury, chronic pain, mental illness, gastro-intestinal disorders, or any other condition that creates barriers to your function, you will, without a doubt, encounter people and situations that do not account for or are not sensitive to your needs. In those moments, it is important to be prepared to not only advocate for yourself and your needs but support yourself if accommodations are not provided or available. Real life is messy, and while you cannot prepare for every eventuality, you can learn from challenges and be better equipped to handle them in the future.
7. Advocate for inclusivity
Take note of what could make life easier especially in moments when you are faced with adversity. Pass along your ideas for improvements to business owners, elected officials, city planning committees, whoever has the power to implement change. Advocate for inclusive design whenever possible. Support politicians and policies that address inclusive design and inclusivity. There are many disabilities, both hidden and visible, and no two people experience the same challenges; but everyone can benefit from an inclusively designed environment. For example, an extended crosswalk time benefits not only those with mobility issues, but those with vision issues, hearing impairments, delayed cognitive processing time and able bodied moms trying to get their kids safely across the street. The more inclusive our built environment becomes, the less time anyone must dedicate to designing individual supports, leaving more time to enjoy and live life to the fullest!
Click over to evika.io to check out more resources on how to navigate your disability to live your best life!