by Jody Smith
The ME/CFS community is all too familiar with the realities of invisible disabilities. As a matter of fact we are rife with them. For this reason, we’re happy to make some noise for Invisible Disabilities Week.
If you have an invisible disability, you’re living with one or more physical, mental or neurological challenges that other people might not be aware of. Some people living with disabilities might still be quite functional. Or then again they may not. Many fall somewhere in between.
Some are able to work, but have no energy at the end of their work day. Others can only hold down a part-time job but manage to take care of their daily personal needs. And then others need help in their day-to-day lives. Many invisible disabilities alter life substantially.
According to the 1994-1995 Survey of Income and Program Participation almost 1 in 10 Americans are severely disabled. This means they are dealing with one or more symptom such as brain injury, cognitive issues, dizziness, fatigue, impaired hearing or vision, learning difficulties, mental health dysfunction and pain.
In all this variety of scenarios there is one commonality. The person dealing with an invisible disability looks just fine, thanks. That’s why it’s called invisible. They might be treated negatively by others who don’t understand. They may be dismissed or ignored rather than being given assistance as someone with a broken arm, a wheelchair, or a cane and dark glasses might receive.
Do you live with cognitive difficulties? Do you have impaired hearing or vision? Do you suffer from pain or fatigue? Chances are those around you may not have a good understanding of what you deal with.
ME/CFS certainly covers plenty of bases as a condition overflowing with invisible disabiities. Some of us are severely ill, which brings its own basket of problems. Some of us who are “only” moderately ill are able to work. These individuals have a better chance of being viewed as normal, more or less, and unfortunately that lands us smack in the middle of the invisible disabilities pool.
Debilitating fatigue? Oh yes. Cognitive snafus? All the time. Vision and hearing malfunctions? Part of the daily fabric. And that’s just the quick-look overview.
So we know this territory inside out. Hence our desire to bring a greater spotlight for those with invisible disabilities.
Invisible disabilities can render the people suffering from them invisible to the surrounding world. Who among us has not had the experience of realizing with shock that they were apparently fading from view?
We don’t get out much. We can’t socialize a lot. We can’t take part in community or church groups. It’s hard for us to be in a room with other people very long. We need it to be quiet, and maybe a bit dark.
And that sets us up to be forgotten, to fall off of people’s contact lists, to drop off the radar. We can’t return calls, and can’t help out with things people ask of us. And so, to all intents and purposes in the outside world, we disappear.
The thing about invisible disabilities is that other people don’t see the impediments we face. So their empathy is not engaged, their desire to help the needy is not tapped. They think they are seeing someone who is perhaps a lazy slacker, maybe not too bright, possibly a little shady, and certainly not pulling their own weight. Not the optimal scenario for the invisibly disabled who need more help than the average person.
A greater awareness is required. We are always grateful to any individual or organization that holds us up so that the healthy world can better understand us.
Invisible Disabilities Week is hosted by the Invisible Disabilities Association. IDW was founded by IDA in 2014. The Invisible Disabilities Association Community has been hosting communities online since 1999.
The goal is to increase awareness, to educate and help connect people with the resources and support they need. Articles, booklets, flyers, pamphlets, videos, seminars, news stories and radio all help to bring greater exposure to the problems faced by those with invisible disabilities and the people who care for them.
Look for the Invisible Disabilities Week on Facebook, Instagram and Twitter.
To learn more about what’s going on:
Invisible Disabilities Support Community
2019 Invisible Disabilities Week – Oct 13th – 19th
Disabilities Affect One-Fifth of All Americans, 1997 Census Brief
ADA: Definition of Disability
Americans with Disabilities 2014
Invisible Disabilities Association
Learning about IDA
Invisible Disabilities Programs
Invisible Disabilities Week
Invisible Disabilities Association FB pg
Image by StockSnap from Pixabay