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What to Know About Living with An Invisible Illness

Sign on side of building that reads "How are you really?"

There are millions of people living in the United States with an invisible and undiagnosed illness. These illnesses can arise seemingly from nowhere, or they can result from something like an accident or a specific situation. 

For example, if you’re in a car accident it can lead to chronic pain. That chronic pain can have a long-term adverse effect on your quality of life, yet doctors may not be able to determine precisely what’s causing it or how to help you after your acute injury heals. 

Living with an invisible illness can take a significant psychological toll because there may be no remedies available to you, and people might not even believe your suffering is real. 

The following are some of the things to know if you or a loved one is living with an illness or even an injury that’s seemingly invisible. 

What Are The Most Common Invisible Illnesses?

There are many health conditions and disorders that can be counted as invisible because you might look completely normal to the people around you. Some of the most frequent disorders that fall into this category include:

  • Allergies
  • Food intolerances
  • Chronic fatigue syndrome
  • Depression
  • Anxiety
  • Diabetes
  • Digestive disorders 
  • Lupus
  • Multiple sclerosis
  • Infertility 
  • Sjogren’s syndrome
  • Rheumatoid arthritis 

The Challenges

When you have an indivisible illness, and especially one that’s chronic, you may experience a myriad of unpleasant emotions along with your physical side effects. For example, you could feel guilty, embarrassed, frustrated, and exhausted. 

Hurtful Comments

If you’re living with an invisible illness, you may frequently hear hurtful comments. If you’re a support system for someone with a hidden health problem, be mindful of how damage these statements can be. 

Some of these include:

  • You don’t look sick
  • When are you going to get better?
  • Are you really still sick?
  • At least you don’t have cancer, etc. 
  • If you exercise you might feel better
  • You’re probably just tired

The above statements are just the tip of the iceberg, and some of the comments you may hear can cut much deeper than these. 

If you’re the person coping with an illness that people can’t see, then you might want to think about how you can respond when you get certain feedback. For example, maybe you provide people who are well-intentioned with some information about your condition. 

Helping Other People Understand What You’re Going Through

Again, it can be a positive thing to provide people who care about you with some information about your illness. You may feel like it’s not your place to educate people, but there are likely individuals in your life who genuinely do care about your well-being and just don’t understand what you’re going through. 

You can talk openly and honestly with people you trust.

You might bring loved ones along to your doctors’ appointments so they can hear information straight from your doctor and ask any questions they might have. Taking someone to your appointments also serves as good emotional support for you. 

While you can help people learn more about what you’re going through, don’t expect them to relate fully. That’s not necessarily something that’s going to be possible. 

You May Need a New Doctor

While it’s already hard enough for the people around you not to understand what you’re going through, if your doctor doesn’t, that can be even more upsetting. Unfortunately, many doctors don’t look at their patients’ symptoms holistically. Instead, they focus on specific symptoms and treating them with medicine without thinking about the bigger picture. 

Your doctor may not see anything in your bloodwork or scans, so then they can come across as not believing what you’re saying. 

If that’s what you experience, you should seek out a new doctor. Even if you feel like your doctor understands but has a hard time diagnosing you based on what you’re going through, think about getting a second and maybe a third opinion. 

Finally, when you have an invisible illness, even when you have a great family and friends, it’s easy to feel alone. Seek out support from people who truly understand what you’re going through. 

There are online and in-person support groups for other people who experience things similar to you. It can be a good outlet for you to share what you’re experiencing and also hear what others go through so that you don’t feel alone. Social support is an integral part of your health outcomes. 


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