Invisible Disabilities Week is an important week of education and awareness of invisible illnesses. This type of awareness is critical from educating the public about invisible illnesses but also to help raise awareness for those who may have one of the illnesses listed.
About the awareness week
The Invisible Disabilities Association (IDA) began hosting Invisible Disabilities Week (IDW) in 2014. This year, IDW will be held October 17–23, 2021.
The goal of IDW is to spread awareness, education, and support around the world for those living with invisible disabilities.
Jess Stainbrook, the executive director and vice president of the IDA, says the week highlights the work the association does year-round, including spreading awareness, creating educational programming, and working to pass legislation for those living with any disability.
“But in particular, we highlight the people with invisible disabilities because … people don’t believe them sometimes because they can’t see their condition,” says Stainbrook.
IDA’s motto for the IDW is: We can show the world our visible courage!
“[People with invisible disabilities] are not trying to be invisible, but our disabilities usually are. Yet, they are very real,” Stainbrook says.
Invisible Conditions, Diseases, and Disabilities
Invisible diseases can include many conditions. Below are some common ones:
- Ankylosing spondylitis
- Long COVID
- Dyslexia and other learning disabilities
- Hepatitis C
- Inflammatory bowel diseases (IBD) such as Crohn’s disease and ulcerative colitis
- Mental illness, such as anxiety, bipolar disorder, and depression
- Multiple sclerosis
- Psoriatic arthritis (PsA)
- Rheumatoid arthritis (RA)
This is not a comprehensive list, just the most common ones.
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Sharing Resources to Help People With Invisible Diseases
The following organizations and sources offer resources and support groups to help people living with invisible conditions learn more about their disease, connect with others, and advocate for the rights of those living with the same condition.
“We need to have this collective support to navigate the daily ups and downs that living with chronic disease brings us,” says Coe.
- American Diabetes Association
- Arthritis Foundation
- Autism Speaks
- Endometriosis Foundation of America
- JDRF (Juvenile Diabetes Research Foundation)
- Learning Disabilities Association of America
- Lupus Foundation of America
- National Alliance on Mental Illness (NAMI)
- National Multiple Sclerosis Society
- Invisible Disabilities Association Programs 4 People
How to Spread Awareness About Invisible Diseases
Talking about invisible diseases with others and sharing reputable information from trusted websites and sources is an effective way to spread awareness.
Irene says sharing your story can also put a face to a condition and give others a real understanding of what it is to live with an invisible condition.
“I think people who don’t have a hidden chronic condition can be dismissive. They don’t realize how much these conditions are part of our lives and control our lives. To be frank, they don’t ‘get’ how bad it can be,” she says.
She adds that people may also miss that it’s not a tragedy to live with an invisible condition.
Living With vs. Struggling With Disease: Words Matter
“While my conditions can be a struggle, I don’t say I ‘struggle’ with fibromyalgia and arthritis. I live with it. I need people who are close to me to not struggle with my diagnoses, not try to make it go away or pressure me with quack solutions, but live it, with me. If I can accept my pain, and most days I do, so can you,” Irene says.
I think the above paragraph goes a long way for how many people with chronic invisible illnesses feel.
Be gentle on others, you don’t know their back story.