What is an invisible illness? Navigating conditions that can’t be seen

Conditions that can’t be seen

An invisible illness is a mental or physical condition that cannot be seen. The US Census Bureau estimates that around 96% of chronic illnesses are invisible. Here are some examples of some of the many invisible illnesses:

• Lupus
• Lyme Disease
• Infertility
• Fibromyalgia
• Depression
• Heart conditions
• Celiac

Since the illness does not show itself to others physically, it can be very confusing and emotionally distressing for patients. When you live with an invisible illness, other people don’t know that you are sick unless you tell them.

I was diagnosed with Common Variable Immunodeficiency (CVID) a little over four years ago, and I wrestled with the invisibility of my disease for quite some time. Part of me loved that I appeared to be “normal,” especially while I was in college. I felt like I could still participate in life without feeling like an outcast. But, there was a part of me that didn’t always feel seen. Whenever I enter a new environment, I know that if I would like to feel seen and heard, it is my responsibility to let others know.

It’s easy to make myself feel crazy

I often have a difficult time explaining my disease to others, especially since it is a rare disease that many people haven’t heard of. When I am describing my symptoms, I often make myself feel crazy or I get scared that others will think I am making things up. For instance, I get really bad fatigue, and it’s often debilitating. But, sometimes when I tell other people about it, I feel like I’m just lazy or I’m exaggerating.

In these moments, I have to remember to bring myself back down to earth. When I talk about my symptoms (like horrible fatigue), I have to remember that they are very real. Just because I can’t physically show people that is how I am feeling, doesn’t mean that it’s not real.

If you have an invisible illness, remember that your story is unique and powerful. You are not crazy. You are fighting a battle that no one sees, and it’s okay if you don’t always have the words to explain yourself.

Having an invisible illness is hard

Invisible illnesses cause a lot of physical and emotional hardship, especially in the beginning. It took me a long time to learn more about my disease and how to feel comfortable in my body. Over time, I have done a lot of research and started this blog, which has helped me learn more about my disease and better understand how to portray it to others.

The body can malfunction in so many ways, and it’s not always easy to find the words to describe it. And that’s totally okay. The people that love and support you will try their hardest to understand what you’re going through, even if they can’t see it.

I have talked about this a lot, but I think it’s really important for people with invisible illnesses to find others to connect with that are on a similar journey. Meeting other people with CVID online has done wonders for my mental health, and have helped me feel validated.

Having an invisible illness also means that you have to speak up for yourself a lot more, and it can be scary. I have found that it is so much easier to communicate my needs, especially when I get a new job or I am going to a new doctor.

You are your biggest advocate, and even though your condition is not visible, you can still make yourself seen!

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