How to Build Community Support & Self-Love When Living With a Chronic Illness

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When you think of the term chronic illness, what comes to mind? Many of us likely picture someone in constant physical pain or who’s always under the weather. Those mental images can definitely be accurate. But mental health conditions and some skin conditions like psoriasis count, too. If you’re a little confused about what constitutes chronic illness, it’s OK; we’ve got you covered. 

According to the CDC, a chronic illness is any condition lasting for a year or more that impacts someone’s daily functioning or requires treatment (or both). If this sounds stressful, it’s because it is. And, not only can chronic illness cause physical pain—it can wreak havoc on our mental health (more on this later).

To better understand how chronic illness can impact someone’s life, we interviewed Nitika Chopra, the founder and CEO of the chronic illness community Chronicon. Chopra has kindly agreed to talk about her experience living with psoriasis, psoriatic arthritis, and myasthenia gravis (an autoimmune disease that weakens skeletal muscles). She also offers some tips for dealing with chronic illness, like finding your supportive community and cultivating love for the most important person in your life—you. 

We *Need* to Shed Some Light On the Mental Health Effects of These Common Chronic Illnesses

Before we get into what causes chronic illnesses and how to conquer them, it helps to get some background knowledge on what they are. In doing so, we can learn to be more empathetic about what others are going through.

So, let’s talk about what some common chronic illnesses look like and why they can be so debilitating—both physically and mentally: 

• Arthritis: A condition that causes cartilage between the joints (like the knees, knuckles, and wrists) to wear away over time. As a result, the bones start to rub together, and as one can imagine—that’s extra painful.This pain can be present all day, every day, and leads to severe depression, anxiety, and exhaustion.     
• Cancer: As most of us know, cancer can be a traumatizing diagnosis. Approximately 15% to 20% of cancer patients experience health anxiety, feelings of demoralization, and existential distress.
• Diabetes: Diabetes is a chronic condition in which someone cannot properly regulate their blood sugar levels. Did you know that people with diabetes are two to three times more likely to have depression? Some even experience what’s known as “diabetes distress,” where the burden of keeping up with daily medications and checking blood sugar levels gets too frustrating to handle.
• HIV/AIDS: Even though this immune system-attacking virus is no longer a death sentence as it used to be decades ago (and medication can ensure partners don’t infect one another), stigma remains rampant. People still fear HIV/AIDS and still ostracize and judge others who have it. To add insult to injury, people living with the virus internalize the stigma, which can lead to shame, depression, and despair. In order to combat stigma, it’s important to normalize talking about HIV/AIDS and continuously allow people to share their stories.  
• Chronic skin conditions: People living with chronic skin conditions like eczema, vitiligo, or psoriasis, often get depressed and feel lonely. And, considering we live in a culture that’s obsessed with looking “perfect” (whatever that means), those with skin conditions frequently deal with low self-esteem, self-consciousness, and embarrassment.
• Long COVID: This may be surprising, but long COVID is most definitely considered a chronic condition. We’re all pretty aware of the physical effects (those body aches are a nightmare!), but how does long COVID impact our mental health? A study found that people affected by long COVID experience anxiety, depression, PTSD, and suicidal ideation.

So, why is knowing all of the above even important? Well, for starters, learning information and discussing sensitive topics is one of the first steps in shutting down stigma. Conversations put shame to bed and normalize what people are going through.

Plus, with some more understanding of chronic illness, we can learn to extend more empathy and compassion—something everyone deserves.

So, How Can Those of Us With a Chronic Illness Build Community *And* Feel Good About Ourselves?

Chopra opened up about living with multiple chronic conditions, “I was feeling very, very alone with my chronic illnesses, and then [I] kind of just assumed ‘Oh, maybe there aren’t that many of us.'”

She soon learned, however, that there are nearly 133 million people in the United States who have a chronic illness! That’s a big community to connect with and the whole reason why she started Chronicon—so no one would have to feel as alone as she did.

She believes that “There’s a lot of trust and intimacy in community care” and shared some awesome tips about how to live your best life when living with a chronic illness. This includes both building healthy (and helpful) support systems and cultivating self-love.

Body neutrality has also been shown to improve self-esteem for those living with a chronic condition or disability.

Stay Away From Superficial Friendships and Fake Friends

Chopra makes it clear that superficial friendships are less than fulfilling. And for good reason: superficial friendships or fake friendships are not only unfulfilling, but they also make us feel crappy.

We can all relate, right? You meet someone you think is sort of cool and you hang out with them a few times, maybe you hang out with them a lot, but there’s no real sense of connection. You don’t ask them for advice, and you certainly don’t call them when you need a shoulder to cry on. Maybe these friendships work for some people, but a more stable and reliable support system is recommended for people with chronic illnesses.

Chopra told Minaa B., the host of The Verywell Mind Podcast, that many people with chronic illnesses long for deep connections with others who really *get* their struggles and their needs. She recalls how living with psoriasis, a visible chronic illness, made her feel different from others. 

“I was never like anyone around me…My psoriasis…was incredibly visible. It was from the tip of my foot to the [top] of my head,” she says. Chopra notes how important it was to find people who cared enough to learn about her conditions: “When I think about making friends, I was always trying to be like everyone else. And my needs were different than other people.”

Eventually. she learned to “filter out” the people who didn’t view friendship in the same way she did. 

So, if you’re the type of person who wants something real when it comes to friendships, don’t be afraid to walk away from relationships that don’t serve you. 

Use the Spoon Theory to Explain Your Needs to Others

Life looks a little different when you’re living with a chronic illness—which is totally OK, by the way—just try to get a little vulnerable with people so they can meet you where you are.

Chopra says that the Spoon Theory really comes in handy when she’s trying to explain her energy limitations to others. But first, what is the Spoon Theory?

As an example, Chopra tells us that an able-bodied person may wake up with 10 spoons, aka full energy, but someone with a chronic condition may only wake up with six spoons of energy. Then, doing life stuff throughout the day costs us more energy. So, the person starting with just six spoons will burn out faster than someone starting off with 10 spoons. 

So, keep the following in mind: 

• If you have a chronic illness or disability: Be open about your needs. Chopra says that when walking with a group of friends, she’ll ask them to slow down so she can keep up: “I stroll. I don’t walk really fast. Part of that is because of my arthritis.” It’s important to speak up because other people are simply unaware of your needs. “They would’ve never guessed that the reason why I need to walk so much slower is because I’m dealing with…my health in these specific ways,” says Chopra.
• If you know someone with a chronic illness or disability: Ask them what they need or how you can support them. If you don’t quite understand their illness and they’re open to discussing it, really make an effort to absorb what they’re saying. You can also do some research on your own, which would minimize the amount of emotional labor you’d require of your loved one—a win-win!

Body Neutrality aka Loving What Your Body Can Do for You Can Boost Self-Esteem

The term body neutrality gets thrown around a lot on social media but for good reason! Body neutrality is the act of appreciating what your body can do for you rather than what it looks like (that’s body positivity).

Because our bodies are constantly changing, body neutrality is more realistic and achievable than body positivity. Let’s face it: loving how you look 24/7 is a tall ask. But appreciating that you’re alive and having overall respect for the body you live in can help us boost our self-worth.

You can practice body neutrality by:

• Thinking about your strengths or talents: Maybe you’re a great artist or writer. Maybe you’re really good at “Jeopardy!” or you know how to calculate math equations in your head (which is amazing, by the way). Whatever is unique to you, own that.
• Revising negative self-talk: Instead of telling yourself, “I wish I weighed X pounds,” say, “My weight has nothing to do with my self-worth.” Instead of saying, “I need a flat stomach,” say, “I appreciate that my stomach breaks down the food I eat on a daily basis to provide my body with energy.”
• Writing down all of the things your body can do: Doing this can shift the focus away from what your body can’t do. We don’t need that negativity!