A disease or illness that others can’t see brings an extra layer of stress to a health-challenged life.
“Invisible conditions can be just as disabling as visible conditions — oftentimes more so — but they don’t get the empathy or credibility that visible conditions get,” says Christina Irene, an invisible-disabilities speaker and author, who lives with osteoarthritis, fibromyalgia, and irritable bowel syndrome (IBS).
She thinks people naturally struggle to believe things they can’t see, and these doubts and denial fuel stigma and feelings of isolation in those with invisible disabilities.
Aspects of the daily life and behaviors of people with invisible illness symptoms may be hard for others to truly understand if they haven’t lived with them or really “seen” them.
5 Curious Things People With Invisible Illness May Do, and Why
If you're living with an invisible, or less-visible illness, you may wish people understood why you …
1. Seem obsessed with logistics when making social plans (Will there be access to a bathroom? How far will we have to walk?)
For instance, Irene says she gets easily fatigued and overstimulated, which makes it necessary for people to manage their expectations if they make plans with her.
"I need them to check in with me and be prepared that I might need to stop the activity and I'll need a place to rest. If I make it through a whole day, say on vacation visiting museums, then be prepared for me to crash hard the next day," she says.
2. Wear sunglasses inside
Joseph M. Coe, the director of education and digital strategy at CreakyJoints and the Global Healthy Living Foundation (GHLF), says those with migraine might wear sunglasses inside out of necessity. For instance, he is sensitive to light, so many settings can cause him discomfort or pain. "We are wearing sunglasses indoors not because we think we're cool (even when we are) or trying to be aloof. It reduces the pain for those with migraine and can reduce triggers," he says.
3. Use a handicapped parking placard even though you “look healthy”
Parking in a handicapped spot is not a perk or privilege, says Coe. "It is an accommodation that is needed for some. You don't need to know why we have a handicap placard even if someone isn't using a wheelchair or cane,” he says.
Irene has a handicapped parking placard that she uses occasionally. "I once used my placard to park right outside a museum in downtown DC and then spent two hours walking around the museum. I was able to spend those two hours enjoying the museum because I wasn't burning myself out walking to and from my car," she says. In addition to fatigue, she says other reasons someone without a visible disability may need a placard include chronic pain, dizziness, or the need to have a vehicle nearby if their condition requires they have a way to "escape" from a situation they are in.
4. Cancel plans at the last minute
The unpredictability and varying symptoms of invisible conditions, whether physical, cognitive, or mental, can interrupt plans.
Coe says sometimes those with invisible conditions cancel plans at the last minute because their symptoms are flaring or acting up. "Don't take it personally. We're likely upset that we can't participate in socializing with you, too," he says.
5. Bring an assistance animal such as a dog on a plane or into a grocery store
The Invisible Disability Association explains that while many people are aware of service animals aiding those with vision challenges, these animals can also help those with other conditions. For instance, service animals might alert their owner of a seizure or significant changes in blood sugar levels.
“[It’s] important that my invisible conditions are recognized so I don’t harm myself with the repercussions of ‘passing’ as able-bodied, so that I’m not judged or shamed in social or professional situations (I may slur my speech, need to stand, have to excuse myself — so many things may happen), so that I can get help sometimes, and so that others don’t take it personally when my physical or mental health symptoms are severe,” says Irene.
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)
Invisible Disabilities 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.
Strength in Numbers: 1 in 4 Americans Report Living With Disability
He says people with disabilities represent the largest minority group in the world.
“We cross over all barriers, whether its skin color, religion, age groups; it’s the only group that anybody can potentially join at any time, and whether it’s a permanent or temporary disability, you might be in or out of the group at different points in your life,” Stainbrook says.
Ways to Participate in Invisible Disabilities Awareness Week
You can take part in the week online by interacting with IDA on Facebook, Instagram, and Twitter, and sharing and commenting on the association’s posts. When referring to the week, tag #InvisibleDisabilitiesWeek or #visiblecourage.
You can also download an?IDW badge and upload it to your social media profile images.
Sharing your personal story online is another way to promote the week and spread awareness. IDA suggests tagging #visiblecourage when you share your story. Some things to talk about might include:
- Your challenges, frustrations, and triumphs
- What helps get you through the day and makes your courage visible
- Your favorite people, doctors, pets, service dogs, and happy places that help you get through
Other ways to celebrate the week include:
- Learn how to request and submit an Invisible Disabilities Week Proclamation for your state.
- Wear blue! Post pictures with your Invisible No More Wristband, pin or a blue shirt, scarf, tie, socks, or hat.
- Join the online support group,?IDA’s Invisible Disabilities Community.
“The overall point of the week is to show that invisible disabilities are a real thing, and to raise awareness, so people understand how to engage with people who have these kinds of disabilities and not be uncomfortable,” Stainbrook says.
Annual Community Walks and Runs in Support of Invisible Diseases
MS Awareness Month, World Arthritis Day, Migraine and Headache Awareness Month, and more; invisible diseases are honored during different days, weeks, and months throughout the year. Because of the pandemic, many events are now virtual. On reputable health websites, such as Everyday Health, you can find resource pages with information about organizations that support specific diseases, or patient advocacy or disease awareness month articles where you might find virtual opportunities and in-person options that suit you.
Some examples of popular awareness events include:
- Jingle Bell Run, held by the Arthritis Foundation on different dates throughout the United States
- Shades for Migraine, held by the Association of Migraine Disorders on June 21
- MS Walk, held virtually by the National MS Society throughout the country on different dates
- NAMI Walks Your Way: A United Day of Hope, held by the National Alliance on Mental Illness on October 9, 2021
By participating in a virtual or on-site walk or run, Irene says you are helping to spread awareness, which can lead to funding for better outcomes.
“Not recognizing invisible conditions is also a barrier to funding, research, development of treatment protocols, and even personal safety,” she says.
Conferences and Meetings on Invisible Disabilities
The IDA will hold its 14th annual IDA Awards Gala on Saturday, October 23, 2021. The event will stream live at 4 p.m. PDT/5 p.m. MDT/6 p.m. CDT/7 p.m. EDT.
Virtual seats are available via a donation and all proceeds from the event support the ongoing work of the IDA.
“We’ll have conversations, awards for people who have been doing different things in our realm, and we have a concert with Biff Gore, who was on season 6 of The Voice, says Stainbrook.
He says IDA holds similar virtual events throughout the year, such as movies, concerts, and other entertainment that can be enjoyed at home, something his community appreciates.
“While COVID has been very difficult on everybody, it did one thing that is very encouraging for our people. That is, it showed people how difficult it is to be stuck in your house and not be able to get out even if you’d like to,” Stainbrook says.
He hopes the virtual events IDA offers provide comfort.
Conferences and meetings for specific invisible conditions can be found by visiting associations and organizations dedicated to those conditions. The Endometriosis Foundation of America, for example, holds an Endo Patient Day each year.
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.
Share on Social Media
Sharing your personal journey with an invisible disease can help others on the same journey, as well as people who care about them. You can share your story online by starting your own blog with the help of sites like?WordPress?and?Blogger.
If you post your story online, the IDA recommends adding #visiblecourage to your post.
“People that live with invisible conditions?battle every day to?maintain a good quality of life,” says Coe.
As a person who lives with migraine, Coe says stigma around invisible disease is a heavy load to carry and can bring on feelings of isolation when a condition is misunderstood by others. For this reason, he says, often times, people with invisible conditions may hesitate from connecting with others.
“I feel that we do this because we don’t want to burden others, but also because we are tired. We're tired of well-intentioned, but unsolicited, medical advice; yes, we probably tried that. We're tired of fighting for access to the treatments that we need to function in this world. And we're tired of the constant stigma created by people who devalue our lived experiences by judging or discriminating against us,” he says.
Sharing your story on social media and online platforms can help you connect with others who understand your situation, as well as bring awareness to those who don’t.
Ask Others to Listen, Pay Attention
“It is important for those who don’t have invisible chronic disease to provide space to listen and acknowledge these stories,” Coe says.
Effie Koliopoulos, who lives with rheumatoid arthritis, is providing a space for those living with invisible disease to share their story. She created a video for her YouTube channel RA and Myself that will premiere on Friday, October 22?at 10 am EST. The Arthritis Foundation will also post the video on its YouTube channel afterward.
The video will include one-minute clips from people sharing how the pandemic has impacted them, whether that be physically, emotionally, financially, or socially. For instance, stories will include personal encounters with COVID-19 infection while living with rheumatoid arthritis, worries about not having access to medications, and more.
Additionally, four people from the video will take over the Arthritis Foundation’s Instagram account during IDW, each sharing what a day in their life is like.
“I felt compelled to put this video idea together because I want the world to know the negative and positive impact the pandemic has had on the lives of those with arthritis. These stories are truly powerful, and we hope that our collective stories can raise more awareness during this unprecedented time,” says Koliopoulos.
Advocating for policies that affect those living with invisible diseases can make an impact and feel rewarding. One way to make a difference is to take part in advocacy campaigns held by organizations like IDA or other organizations that do work specific to your condition.
If there isn’t anything local to get involved in, try calling your senator or congressperson and advocating for health coverage, special accommodations, regulations, funding, and more.
Get Involved in Research Studies and Clinical Trials for Invisible Diseases
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