“But You Don’t Look Sick!”

More than 53% of Americans are diagnosed with at least one chronic medical condition. Despite this startling number, for those living with a chronic illness, it tends to be an incredibly isolating experience. Most of these chronic conditions, such as Lyme disease and long COVID, don’t present with visible symptoms. While invisible illnesses may not have any external signs, they still deeply impact the lives of those living with them. Adding insult to injury, those suffering with invisible illness are likely to also experience profound grief, frustration, embarrassment, and hopelessness.

One of the unfortunate realities people with long COVID face is that our society seems only able to handle observable ailments (e.g., a broken leg), those that are brief (e.g., a cold), or those that are easily relatable to (e.g., whiplash from a car accident). The nature of our lives—from work or school, to friends and family—isn’t well suited to chronic conditions, especially those that may be debilitating.

The Struggles of Living with Long COVID

“I’m tired of being told I’m a survivor. I don’t feel like a survivor! I feel like I’m a sufferer, and I never know day to day whether it’ll be an okay day or a bad day.”

One of the more upsetting aspects of living with long COVID is the constant barrage of misconceptions surrounding our complaints. These misconceptions are often packaged in scornful condemnations (e.g., “You’re lazy! Why won’t you help with the kids more?”) or well-meaning ignorance (e.g., “You were having fun earlier so you must be feeling better!”).

Teaching others how to best support you in your struggles is a vital step on the road to recovery.

Source: National Cancer Institute/Unsplash

The reality is that just because we look fine or healthy doesn’t mean we are fine. Looks don’t always correspond with how we’re feeling emotionally or physically. Just as importantly, invisible illnesses aren’t psychosomatic. It’s not “just in your head.” Even if stress worsens our symptoms, that doesn’t mean the root cause of our condition is psychological and it certainly doesn’t mean that we should just “learn how to cope better.”

Another common misconception is that chronic conditions like long COVID are stable. We often hear this in phrases like “You were fine this morning.” There are times when our illness feels better and times when it feels far worse. These ups and downs tend to be unpredictable. More frustratingly, when our symptoms flare up, we don’t even know how long the flare up will last; it could be days or even weeks. There’s just no way to predict a flare up’s severity or duration.

How to Talk About Your Long COVID Experience

“Stop telling me I’m going to be okay or that I should look for the positive. And please stop telling me it could be worse—this is worse. My life is being torn apart by this and there’s nothing anyone can do to help me get back to where I used to be.”

Understanding long COVID can be challenging for those of us living with it, but it’s also difficult and confusing for our coworkers, friends, and family.

Consider this: A recent study identified more than 200 symptoms affecting 10 organ systems. In this same study, just over 65% of survey respondents experienced their symptoms for at least six months. Moreover, only 27% of these respondents were able to continue working the same number of hours as they did prior to contracting COVID. With staggering numbers like these, how would we even begin to talk about long COVID to others?

While it may be difficult to talk to others about our long COVID experience, it is likely helpful to do so. Proactive communication is key. Sometimes we feel embarrassed at having to admit that we need help, flexibility, or increased patience from those around us. We may worry that we’re a burden, but open communication about our needs and limits helps alleviate that sense of burdensomeness. It also gives others an opportunity to learn and adjust their expectations accordingly.

When talking about long COVID, it’s important to explain your limitations. Maybe that’s informing coworkers you need fewer distractions at the office so that you can focus better. Maybe that means letting friends and family know that while you plan on attending a party, you may have to leave early due to fatigue. Verbalizing your limitations enables you to set expectations for yourself and others.

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Additionally, it may be important to share how you feel about having long COVID. It’s hard talking about difficult emotions. It may feel completely foreign to you. But sharing your emotions gives loved ones a window into what this is like for you. Most people with a chronic illness are used to being criticized and not believed. They’re even used to the kind of toxic positivity that is meant to be encouraging and helpful, but really feels patronizing and hurtful.

It can be helpful to share your grief over the life you feel you lost and for the life you now endure. Share your worries, guilt, sadness, and frustrations. Social support can be invaluable when struggling with a chronic illness.

Ideally, your friends and family will be supportive and caring. If they’re not, however, seek emotional support elsewhere. There are many support groups springing up online and in communities around the world where you can share your concerns with others suffering with long COVID.

It can also be beneficial to bring loved ones to your medical appointments. Not only can your health care team validate your experience of living with long COVID, but they can also answer questions your loved ones may have.

Finally, it’s important to let others know how best to support you. Maybe that’s not bringing up your condition unless you choose to talk about it. Maybe it would be helpful if your loved ones offered emotional support without attempting to fix us or “do” for us. The people in your life who care about you want to help and be supportive, but unless they too have a chronic illness, they likely don’t know how. They need us to help guide them in this process.