Diary / Lifestyle / Sep 26, 2022
10 Ways to Show Support for People With Invisible Illnesses
Written by: Harper Spero
Not many people know from the outside that I have an invisible illness. An invisible illness is a chronic medical condition that shows no outward signs, so it isn’t obvious to onlookers.
When I was 10 years old, I was diagnosed with Hyper IgE, also known as Job’s syndrome. It’s an extremely rare immune deficiency that caused me to experience skin issues, pneumonia, ear infections, colds, and lung problems. When I was diagnosed, I was focused on trying to be a “normal” kid. I never wanted to be defined by my health issues, so I spent the first 27 years of my life hiding from my diagnosis and just dealing with symptoms as they came up. That all changed in late 2012, when I had a lobectomy to remove a quarter of my right lung as I had a cyst the size of a golf ball in my right lung that was later diagnosed as aspergillus.
It was such a significant time in my life, and I came out of the surgery grateful to be alive. The surgery--and recovery from it — turned my world upside down, and it was hard to hide and ignore my health any longer. I started sharing my story with friends, writing about my story, and owning my health.
As I finally came out of my shell, I started to seek out other people who also manage invisible illnesses. Through my conversations with these people, and my own experiences, I realized that people don’t know what it’s like to live with an invisible illness. As an avid podcast listener, I decided to create the content I wanted to hear. I set out to create a platform to share the stories of people living with invisible illnesses that are often overlooked as they aren't visible to the naked eye. In July 2018, my podcast, Made Visible, was born.
The mission of Made Visible is to assist those living with hidden health challenges feel accepted and supported as they try to live a normal life. It also aims to teach people how to be sensitive to those who have invisible illnesses.
Here are some of my and Made Visible’s guests’ best tips for how to show compassion to those with these hidden health challenges:
1. Be wary of coddling.
The last thing someone with an invisible illness wants to do is to coddle a friend or family member who doesn't know how to handle the "sick" person. Try to be strong in front of the person who is often spending a lot of time at doctor's offices, getting testing and dealing with the invisible illness and find outside friends/family members to support you. Treat people with invisible illnesses like normal people, not sick people. Don't talk down to them or make them feel less than.
2. Remind your loved ones with invisible illnesses that you are there for them no matter what.
People with invisible illnesses appreciate text message reminders that they are loved and are being thought of. It's meaningful to them, whether they decide to respond to you or not.
3. Remember that anyone you meet might have an invisible illness.
Invisible illness means that just because we may look fine, does not mean that we feel fine or aren't sick. Most of the symptoms that I deal with living with a rare immune deficiency are things you would never be able to see when I'm walking down the street. Be compassionate to all people given that you don't know what they're going through.
4. Save the unsolicited advice.
Nobody with an invisible illness wants to hear this. There is no need to share success stories you've found online about the person's condition unless they ask for it. Don't tell them about the new product you read about that you think can heal them unless they ask for resources and tips. This is their health, not yours.
5. Give gifts that will assist those with invisible illnesses with living with their illnesses.
If someone with an invisible illness is going through a surgery or an extra hard time, think about the things that they love in life or the things that will make them more comfortable or easier during this challenging time. A cozy blanket, comfortable pajamas/robe or something even more tailored to their interests like a gift card to seamless.com where they can order food are great ideas.
6. Read between the lines.
When people with invisible illnesses are going through a rough time, they may have trouble expressing how they’re feeling and what they need. Try to read between the lines and help them in whatever way possible. There often becomes a time when you’re visiting a friend when they are ready to be alone but are afraid to kick you out -- try to read their body language and follow it.
7. Be patient and understanding about invisible illness patients’ mobility speed.
“Perhaps I’m not trying to move slowly or be in people’s way, or trying to move or pose differently in yoga which is distracting to other people, on purpose. Just leave me be, and understand that I might look okay but there is a reason I am so limited in my speed, movement, poses, etc.” - Melissa Marans, Episode #32
8. Be flexible and compassionate.
“It’s comforting to know that I have a beautiful community who will adjust plans as needed and show up when I need support. When in doubt, just show up with ice cream.” Lauren Chiarello, Episode #15
9. Listen actively, but also ask questions.
“Too often people just do things that they would want to in situations with people with invisible illnesses, instead of asking.” Tiffany Dyba, Episode #7
10. Make challenging things easier.
“Help with daily tasks like grocery shopping, meal prep, picking up prescriptions, and even taking people to their doctors appointment!” - Akilah Cadet, Episode #22
We never truly know what another person is going through unless we ask, listen, and do our best to understand. Talking about my invisible illness is something I’ve only done in the past few years, but it has been extremely freeing, and it’s helped my friends and family learn how to support me better. I want the same for others who are silently struggling. I want us all to be more aware of how little we know about what others are experiencing, physically or psychologically — unless we ask.
*Harper Spero's journey with a rare, invisible illness motivated her to create Made Visible podcast, which is a one-of-a-kind platform that brings to light real, raw, and significant stories from people suffering from a range of debilitating yet mostly overlooked invisible illnesses, from Hodgkin's Lymphoma to bipolar disorder. *