May 12th is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. ME/CFS is a serious, chronic condition which causes a person to experience profound fatigue that limits their ability to perform everyday functions. People with ME/CSF can also experience pain, problems thinking and concentrating, worsened memory, and sleep disturbance. Since people with these conditions may not show outward signs of having a disability, like using a mobility device, ME/CFS can be considered an invisible or less visible disability. Invisible disabilities are physical, mental, or neurological conditions that are not immediately obvious, yet may limit or challenge a person’s movements, senses, or activities. Invisible disabilities can include sensory disabilities, autoimmune disorders, some cognitive disabilities, learning disabilities, and mental health conditions, among others. They may also include chronic health conditions, such as ME/CFS, diabetes, Celiac disease, and fibromyalgia, that can have debilitating symptoms which limit one’s ability to participate in everyday activities.
People with invisible, or hidden, disabilities can also face barriers to education, employment, and community participation. They may also face other barriers based on other people’s attitudes or perception, such as denial of services because their disability is not visible, stigma around their disability or condition, and being confronted by someone when using accessible spaces or disability services but not “looking disabled.”
People with invisible disabilities have the same rights as people with visible disabilities and people without disabilities. They have the right to live, work, and play in their communities without barriers. They may require support to participate in their communities, live independently, or take advantage of the same opportunities as their peers. These supports may include workplace accommodations, such as reading materials in alternative formats or work areas with low light or low noise; audio and visual announcements in public transportation or airports; accessible or van accessible parking spaces; and barrier-free access to public spaces, among others.
NARIC’s information specialists are often asked for information and resources related to invisible disabilities. This month, we are highlighting evidence-based resources from the NIDILRR grantee community for people with invisible disabilities, their families, and service providers, which may include guides, calendars, factsheets, and more.
Below, you will find just a few examples of evidence-based resources produced by the NIDILRR community:
- The project Being Needed: Building Social Connections that Matter to Reduce Social Isolation and Loneliness develops and tests an intervention to enhance social connections and feelings of mattering among adults with serious mental illnesses. As part of its work, this project has created publications such as Why Mattering Matters, which shares the importance of social connections and mattering for all people and why these issues are especially important for people living with mental illness. The project presented a webinar, Never Being Sought After by Anyone for Anything: Social Isolation and Loneliness Among Adults with Serious Mental Illness, hosted by NIDILRR/ACL, that brought researchers together to discuss social isolation and loneliness among people with mental health conditions.
- The Rehabilitation Research and Training Center (RRTC) on Employment of People Who are Blind or Have Low Vision improves employment opportunities and outcomes for people who are blind or have low vision. This RRTC develops many consumer-focused products that are informed by decades of research into issues that affect people who are blind or have low vision. These products include employment resources, resources for professionals, resources for businesses, and Deaf-Blind resources, among others.
- The project Characterization and Treatment of Chronic Pain After Moderate to Severe Traumatic Brain Injury researches and evaluates the treatment needs of people living with chronic pain following traumatic brain injury (TBI). This project created two factsheets in collaboration with the Model Systems Knowledge Translation Center, TBI and Chronic Pain: Part 1 and TBI and Chronic Pain: Part 2. These factsheets guide in understanding the common causes and symptoms of chronic pain as well as tips for managing chronic pain without the use of medication. The project created infocomics that tell the story of a group of people in a support group that focuses on chronic pain.
- The New England ADA Regional Center developed a series of resources to support people in recovery from substance use and opioid use disorders, to help them understand when and how the Americans with Disabilities Act (ADA) can protect their rights and educate employers about their responsibilities under the law to their employees in recovery.
- The Rehabilitation Research and Training Center on Employment for People with Physical Disabilities published an article, Should I disclose to my employer? It’s more complicated for people with invisible disabilities, describing some of the challenges individuals who have invisible disabilities may face in deciding why and how to disclose their disability to an employer, and research to develop a decision aid to help them think through the trade-offs in disclosing or not disclosing as part of the reasonable accommodation process.
To learn more about these and other products from the NIDILRR community, contact NARIC’s information specialists.