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5 Tips For Being Mindful Of People With Invisible Chronic Illness

People who have invisible chronic illnesses don't always know how to start a conversation or what to say. There is no beginner's manual on how an individual navigates an often rollercoaster of revolving symptoms. It can be especially difficult for those who are newly diagnosed to articulate or manage. So here are 5 things you can do to help them feel less overwhelmed as they experience invisible chronic illnesses.

What is an Invisible Chronic Illness?

Chronic illnesses are medical conditions that are long-term and typically cannot be cured. They can, however, be managed with treatment. While there is no single cause of chronic illness, there are some risk factors that can make someone more likely to develop a condition, such as genetics, lifestyle choices, and environmental factors. Invisible chronic illnesses can include conditions like long Covid, myalgic encephalomyelitis, chronic fatigue syndrome, (MECFS), fibromyalgia, Lyme and more.

Some studies project Long Covid alone as impacting over 24 million adults! However, people with these conditions may not look sick, but they often feel sick. These illnesses can be difficult to manage because they are often invisible to others.

Here are 5 things you can do to be mindful of people with invisible chronic illnesses:

1. Be patient: People with chronic illnesses often have good days and bad days. Don't expect them to always be at their best. Chronic illness can often make everyday tasks much harder to accomplish. People with invisible chronic illnesses often have to cancel plans at the last minute because their symptoms flare up unexpectedly. Be patient if this happens. Disabling symptom flares can be both mentally and physically difficult for people with invisible chronic illnesses to endure.

2. Be understanding: Invisible chronic illnesses can be unpredictable and frustrating. Try to be understanding when things don't go as planned. People with invisible chronic illnesses often feel pressure to silently push through their symptoms, which can make them even more severely ill. Feeling comfortable with vocalizing struggles with symptoms is a good sign that they feel safe and understood.

3. Be supportive: Offer your support and encouragement. Let them know you're there for them, no matter what. Don’t be afraid to ask how someone is feeling or if they need help. Just checking in can mean a lot to someone dealing with an invisible chronic illness. Believe them when they say they’re not feeling well. Just because someone looks healthy doesn’t mean they feel healthy on the inside. When somebody with an invisible chronic illness says they don’t feel well, believe them and offer your support.

4. Be respectful: Remember that everyone deals with their illness in their own way. Respect their decisions and boundaries. Ask the individual if they are open to help instead of just jumping into carrying heavy items or opening a door. Don’t compare their illness to yours or anyone else’s. Everyone experiences invisible chronic illnesses differently, so don’t compare their experience to yours or anyone else’s.

5. Be informed: Educate yourself about invisible chronic illnesses so you can better understand what people with chronic illnesses experience. Also, take some time to learn about different chronic illnesses and how they affect those who suffer from them. This will help you be more understanding and compassionate towards other people you may not have met yet, or others who haven't divulged their silent struggles yet. Extra credit if you also become an advocate. Help spread awareness about chronic illnesses and stand up for those who suffer from them. Speak out against discrimination and fight for better access to care and resources. The more people who join in awareness that are not directly impacted, the better chance there is to find therapies and cures.

If you have read this entire article, congratulations! You're already one step closer to better educating yourself about invisible chronic illness. BIPOC Equity Agency is an agency that is founded by and supports people with chronic illness, neurodiversity, and underserved communities. Working with our organization contributes to greater access, inclusion, and prosperity for those who experience one or more of these health challenges. Inclusion is a defining aspect of our organization. We believe that health, wellness and empowerment of diverse communities should be the focus of all organizations. Inclusion is more than just the act of including. It is the impact it will make on people for generations to come.


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