The Honest Realities of Chronic Illness We Don’t Often Discuss

It can be difficult to know when and how much to share with others about living with a chronic illness. There are certain things that are harder to share than others.

Living with a chronic illness can feel very lonely. There are some truths about my experience that I rarely share with others.

It may be out of fear of seeming like I’m always complaining or even being labeled as a hypochondriac.

More often, it’s simply because it’s easier to “go along to get along.” In some ways, not sharing even empowers me to not let my chronic illness run my life.

These are five realities that can be difficult to share with others when you live with a chronic illness.

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1. Your diagnosis (or diagnoses)

Many chronic illnesses are not visible on the surface. When you live with a “nonvisible” or “invisible” condition, you have to choose how much you want to disclose to others.

It can be a difficult decision to know when to disclose a chronic illness, especially in different scenarios such as when beginning a relationship or starting a new job.

Most of the time, when I choose to share my diagnosis, it’s to explain why I’m not able to participate or commit to a certain activity.

Typically, I choose not to share my diagnosis with others (except for those close to me), but my feelings around this issue are complicated.

Oftentimes, I don’t have the bandwidth to explain what rheumatoid arthritis (RA) is (many people assume it’s the same as osteoarthritis), how it affects my life, and answer all the questions that might ensue. On the other hand, I feel a responsibility to advocate for others who live with RA by sharing my experience.

This is why I share a lot about navigating my life with a chronic illness through my writing but not as much in my day-to-day life.

Many people living with chronic illness often live with more than one condition. According to the Centers for Disease Control and Prevention (CDC), 6 in 10 adults in the United States have at least one chronic condition, and 4 in 10 adults have two or more.

Explaining the intricacies of one condition can feel tough, let alone multiple conditions and how they might interact.

2. How you’re really feeling on any given day

After living with a chronic illness for almost 5 years, I know that when most people ask how I’m doing or even ask how I’m handling living my condition, they don’t necessarily want to hear the true answer. They are being polite, and that’s just fine!

That’s why most of the time, I simply say, “I’m doing fine.” Even with close family and friends, I often act like I’m feeling better than I am because I don’t want to seem negative or that I’m complaining.

Living with chronic pain is very difficult, but humans have a way of adapting. My pain almost feels like background noise that I have grown accustomed to.

Sometimes that noise gets very loud and drowns everything else out, and sometimes it’s more subtle, but it’s almost always there, which is something that I mostly keep to myself.

When I’m having a high pain day, however, I do share that information with my family members. I need them to know so that they can understand why I’m not able to go about my daily activities as usual.

3. The fears that you carry

The fears around living with a chronic illness can feel very heavy, and this is something that you might not share with others.

You might have fears about finding and keeping a job or starting a family and caring for children.

Personally, I struggle with fears around disease progression, disability, risks from medications, financial implications of being chronically ill, and more.

The fears that you carry from living with a chronic illness do not need to be shared with everyone, but sharing them with someone you trust, such as family or a trained therapist, can help you to process them and any accompanying emotions in a healthy way.

4. That you’re rarely (if ever) looking for unsolicited advice

One reason you might be hesitant to share a diagnosis is that you may be subjected to unsolicited advice. This advice tends to come from good intentions, but it can feel invalidating, and it’s rarely something that you haven’t heard (and likely tried) before.

Some people may even use a diagnosis as an opportunity to sell products or programs with promises of “healing.” In this case, I have learned to set a hard boundary of “Thanks, but no thanks.”

For me, it feels much better when someone simply listens to my experience with empathy, which is what I try to do for others when they share their concerns or struggles with me.

5. The mental load of ‘being sick’ indefinitely

Living with chronic physical health conditions can affect your mental health as well.

This might vary dependent on condition. For certain chronic illnesses like RA, one study found “Up to 50% of patients with autoimmune diseases show an impairment of health-related quality of life and exhibit depression-like symptoms.”

Sharing details around mental health struggles can be difficult, but it’s important for people with chronic illnesses to share how they’re feeling physically and mentally with their doctor.

There are many options for mental health treatment, such as Cognitive Behavioral Therapy, which can help with addressing fears, managing symptoms, and coping with the stress that comes with dealing with a chronic illness.

The bottom line

It can be difficult to know when and how much to share with others about living with a chronic illness.

What’s important is that those living with chronic illness have a few people in their lives that they can share the difficult truths with, whether it be a partner, trusted friend, or therapist.

I have learned that it’s not important for me to share my diagnosis and experience living with a chronic illness with most people but that it’s very important for me to fully share myself with a few people that I can trust.

I also need to be brave enough to speak (and write) about those truths in a way that feels right to me and set boundaries when I need to so that I can be as healthy as possible.