People who live with invisible illnesses often feel, well, invisible: to the world as whole, to their loved ones, and even to health care professionals. As the name suggests, the physical symptoms of these types of conditions, which include inflammatory arthritis and chronic pain, such as rheumatoid arthritis, lupus, or axial spondyloarthritis, can’t usually be seen by others — just felt by the person living with them. But the repercussions of having an invisible illness are noticeable and, oftentimes, judged by outsiders. When you can’t get out of bed because fatigue has overtaken you, people may chalk it up to laziness. When you push through excruciating pain to attend a gathering, people may think you’re exaggerating your condition or even faking it.
Simultaneously fighting off critiques while managing disease symptoms is not only exhausting, but demoralizing. It pushes people to the point where they find it easier not to share their struggles.
The problem with that approach, as understandable as it may be, is that it slows down the progress being made to bring visibility to invisible illnesses. When one more person hides their illness, that’s one less person raising awareness about chronic diseases, which affect six out of 10 U.S. adults, according to the U.S. Centers for Disease Control and Prevention.
As part of Arthritis Awareness Month, we asked members of our community what makes them feel less invisible. The majority agree that being more visible is not about being placed under a spotlight to share their stories. Rather, it’s about being empathized with, listened to, and included.
Here, some CreakyJoints members share the ways, big and small, that others make them feel more visible.
Consider sharing this article with loved ones in your network to thank them for their support or to help encourage them to change how they demonstrate their support.
Empathize through words and actions
Someone who is not sick may not be able to understand all the nuances of life with an invisible illness, but they can probably relate to some of the physical challenges that come with it. Imagine the worst case of the flu — high fever, achy limbs, zero energy. Now consider that this malaise-like feeling can plague people with inflammatory conditions every day for weeks on end. With that in mind, it’s probably a lot easier to put yourself in their shoes.
“I feel less invisible when people show empathy. ‘I’m sorry.’ ‘I’m here for you.’ I can’t imagine how you feel,’” says Rene M. “Hearing someone say these things to me makes me feel like I’m important and my diseases haven’t made me invisible.”
Of course, not everyone is a fan of hearing “I’m sorry,” when it comes to their condition.
“The last thing I want somebody to say to me is ‘I’m sorry.’ It’s not your fault,” says Lauren M., who adds that she merely wants someone’s “understanding.”
Fortunately, there are other ways to offer empathy.
“I feel less invisible when someone asks me how I am feeling,” says Wendy D.
Even a small action can go a long way to offering empathy.
“I feel less invisible when a stranger can see it’s difficult for me to walk, so they hang back a bit. Then when I turn to look at them, they give me a smile. Not a flashy or ornery smile, but just that little bit of light in their eyes that shows me they get it,” says N Wrier.
Take time to listen and learn
We live in a world where information is readily available. But not everything you read on the internet is accurate or applicable to what your loved one is experiencing. (Remember: chronic illnesses can affect everyone differently.) So while it’s helpful to do your own research, it’s important to supplement that by talking to your loved one about their illness. Not only will it give you a better picture of their experience, but many community members, like Ronnie B., say “asking genuine questions and listening to my answers instead of assuming,” goes a long way to making them feel less invisible.
And it’s not just friends and family who need to pay attention. Health care providers also need to actively listen to their patients.
“I feel less invisible when a doctor actually takes me seriously and listens well, and doesn’t just treat my symptoms,” says Tina M.
Help, especially when asked
As much as people with chronic illnesses want to maintain their independence, they may struggle with certain tasks and require an extra hand. Rather than question it, provide it.
“When my need for help is noticeable and someone acts on it, it helps,” says Tami M.
“I feel less invisible when someone doesn’t ignore me when I ask for help,” says Elizabeth F. “When I’m ignored, told to quit acting, or worse, when someone tells me to ‘stop milking it,’ that makes me furious and can add five points to the pain level and sometimes set me back on my acceptance of my own condition. But when I ask for a little help and someone does it without me having to explain, it takes part of my pain away.”
Be inclusive — and flexible
People with chronic illnesses may get irritated when they are invited to an event that poses some challenges for them, like a long group hike or an unmasked gathering during the pandemic. Though it may be the result of absentmindedness on the host’s part, it can come off as disregarding one’s disabilities.
But they also find it irritating, and hurtful, to be excluded. It implies that the person doesn’t have a say in what they can and can’t do. By extending an invite and caveating it with an understanding that they may not be able to participate, you acknowledge their illness and give them the autonomy to make their own decision. (An even better solution is planning something that your loved one feels comfortable and happy participating in — because you’ve discussed it with them and know it will work for their needs.)
“I feel less invisible when my friends invite me to do things, even though they know I might not be able to go,” says Ellen. “It’s so nice to feel thought of and included.”
Bob L. feels similarly, writing, “I ask my friends to invite me and welcome my cane. I may not be able to do an activity, but if my joints are being naughty, I can still come to the event and enjoy the good people there.”
Again, understanding they may have limitations but not excluding them because of it is key in making the illness and the person more visible.
“I really appreciate my friends’ grace and understanding when I can’t go [to something] or need to cancel at the last moment,” says Belinda T.
There is no one way to make people with invisible illnesses feel more visible, and they may vary from person to person. Ultimately, it comes down to acknowledging and learning about a person’s illness and showing them kindness and decency. And, of course, following the original golden rule: Treat others the way you would want to be treated.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
Chronic Diseases in America. National Center for Chronic Disease Prevention and Health Promotion. U.S. Centers for Disease Control and Prevention. January 12, 2021. https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm.