Understanding Invisible Illness
I have P.O.T.S, which stands for Postural Orthostatic Tachycardia Syndrome, a medical condition that impacts me daily. POTS is a condition that causes my autonomic nervous system to not regulate properly, which means my blood pressure, heart rate, and blood sugar all “do their own thing” and don’t communicate. This also affects my body temperature, digestion, and all things related to the autonomic nervous system. My POTS symptoms cause dizziness, fatigue, nausea, and migraines. Overall, I refer to how I feel when I’m having a POTS flare as all around “bleh.” Although I don't have symptoms daily, I am constantly monitoring my sleep, hydration, meals, and lifestyle in general to be as productive as possible to not have a flare up. No matter how hard I try, flare ups are inevitable, and I know that I could have a bad flare up at any moment.
Because all these things are going on inside my body, but with no visible disabilities, many people have no idea all the things that my body and mind are constantly struggling with. Whether that's managing symptoms or trying to maintain being symptom free. Because I might look fine on the outside, many people don't understand when I say how sick I feel. I have been told “I’m overreacting” or “look fine’. I have been put in a position where I must learn to advocate for myself in school, work, and in social settings. I grew up being misunderstood and having to justify what I was experiencing. The reality is, this is not just something I experience but something that all people with invisible illness may struggle with. Let’s dive into invisible illnesses, what they are, and how those who are struggling can be best supported by the people around them!
What is an invisible illness?
In our world, I believe that we are too quick to judge others, their abilities, struggles, or emotions, just from a quick glance. It’s important to understand that just because we may not see something, doesn't mean it's not there. I’m sure that at some point in your life, you have met someone who looks perfectly healthy and then later find out they may be struggling with something very serious. Many people live their lives with an invisible illness. Someone with an invisible illness may look healthy but may be really struggling inside.
Invisible illnesses are medical conditions that don't have many physical symptoms that show on the outside but rather may be struggling on the inside. Some common invisible illnesses are people struggling with chronic pain, autoimmune diseases, neurological disorders, chronic fatigue, or a mental health condition. People struggling with these illnesses may look fine to others but may live lives that are very impacted by their conditions.
It is important to understand invisible illnesses, as many people you know may be dealing with one. Someone with an invisible illness may feel “ok” one day and be super sick the next day. With many of these conditions, symptoms can come unexpectedly and might last a few hours to a few weeks. Living with an invisible illness can be exhausting, and the constant worry of “am I going to feel okay today?” or “what if I don't feel good?” crosses people's minds daily.
As someone with an invisible illness, I reflect on the constant worry, careful planning, and stress I feel, as I try to navigate each day as symptom free as possible. But I also know that I will have flare ups, and I have to be prepared for when they happen.
Supporting someone with an invisible illness
One thing that many people with invisible illnesses experience is the frustration of their symptoms or feelings being constantly dismissed. Some people with invisible disabilities are told “well you don't look sick”, or in some cases, people can be misdiagnosed for years as many doctors may not believe that your symptoms are valid or linked to a different cause. Validation and support make the biggest difference!
When supporting someone with an invisible illness, it's important to believe them, be patient, avoid giving advice, and educate yourself about their condition!
● Believe them: If they say they don't feel good, even if they “look” fine. Trust them!
● Be patient: Understand that invisible illnesses have flare ups. This can make a huge difference. Don't put pressure on your friends or family members to make plans if they aren’t feeling good and try to be accepting and accommodating if plans need to change at the last minute.
● Avoid giving advice: Rather than trying to give advice on something they’ve most likely already tried, try to ask how you can help instead! They are the experts on their condition. Try to be there to support them and help them when they ask for it!
● Learn about the condition: Learning what your friend or family member is going through can allow you to be more knowledgeable and understanding about what they may be experiencing. This can help you better support them and advocate for them.
The Spoon Theory
The spoon theory was created by Christine Miserandio. It is used to explain how people who have a chronic illness or a disability use energy differently than someone who does not. In the spoon theory, spoons represent energy.
Imagine you wake up and you must trade spoons for tasks. You are given 10 spoons to allocate throughout the day. For someone without a health condition getting dressed might cost ½ a spoon. For someone with a health condition getting dressed might cost 4 spoons. Now you are dressed but you must allocate your spoons for the rest of the day. Making breakfast costs you 2 spoons, going to work costs 4 spoons, by the time you get home you have no more energy left to pay.
Getting dressed, cooking, hanging out with friends, going to work - all those things require energy or a “spoon”. People without a health condition might not have to be as aware of how much energy they use or feel like they have plenty to use. However, those with an invisible illness might only have a limited number of spoons. Once someone with an invisible illness runs out of spoons, they might not have any more energy to do anything and need to rest. This is why it is so important that individuals use their spoons carefully. This theory aims to help people understand how hard it can be living with an invisible illness and how much planning and prioritizing goes into doing every task throughout the day.
Being Mindful
It is important to be mindful of invisible illnesses to create a more inclusive and understanding community! Next time you interact with someone, pause before being quick to judge and consider what they might be going through that you can’t see just from looking at them!
Written By: Rachel Kruman
References
Amy Marschall. (2024, September 10). People with chronic illnesses swear by the “spoon theory” to communicate their needs-here’s what it means. Verywell Mind. https://www.verywellmind.com/how-spoon-theory-can-make-sense-of-chronic-illness-8697704?utm
Lacey Ramburger. (2024, August 22). How to support someone with chronic illness: 8 Tips to help. Oak Street Health. https://www.oakstreethealth.com/how-to-support-someone-with-chronic-illness-8-tips-to-help-1511058
Rocketto, L. (2021, August 18). How to make people with invisible illnesses feel seen: 4 golden rules from the CREAKYJOINTS Community. CreakyJoints. https://creakyjoints.org/living-with-arthritis/patient-stories/how-to-help-people-with-invisible-illnesses-feel-seen/
What is an invisible disability?. Invisible Disabilities® Association. (2025, March 16). https://invisibledisabilities.org/what-is-an-invisible-disability/