How to explain invisible illness to a healthy person

What is an invisible illness?

Invisible illness is when you cannot tell that someone has a chronic illness at first glance. For that reason, invisible illnesses are defined from the perspective of the general public. However, this does not make them any less serious than other, more visible, conditions.

A person’s condition may be invisible for several reasons. First, they may not (always) require visible supports (e.g., mobility aids, service animals, etc.). Second, they may be more likely to go out on days where they’re experiencing less severe symptoms. Therefore, others are not witnessing their worst days, when their condition is flaring. Most importantly, a condition may be invisible because there is a severe lack of awareness in the general public.

Invisible illness, as a concept, can be difficult for healthy, able-bodied people to grasp. When the media portrays chronic illness, they often show someone in a wheelchair or someone who has lost their hair due to chemotherapy. We are trained to look for signs like these to understand that someone is sick. Dynamic and invisible illnesses need more awareness and representation.

Due to this general unawareness, it can be hard to explain invisible illness. It’s often met with disbelief and a lack of empathy. People with invisible illness often receive less support from others, including medical professionals. In this article, we’ll share how you can explain invisible illness to people who may not understand.

What are some examples of invisible illnesses?

Many chronic illnesses and/or disabilities are invisible. Their symptoms are unseen or misunderstood by others. 

Here are some examples of invisible illnesses:

• Fibromyalgia 
• Multiple Sclerosis (MS) 
• Lupus
• Chronic Fatigue Syndrome (CFS) 
• Traumatic Brain Injuries (e.g., concussion) 
• Arthritis 
• Irritable Bowel Syndrome (IBS) 
• Crohn’s Disease
• Endometriosis
• Undiagnosed Chronic Pain
• And more… 

Often, invisible illnesses are dynamic, meaning that severity and symptoms can vary day-to-day. For this reason, people with invisible illnesses may be criticized on their good days.

Here are a couple examples to show how this works:

John has a traumatic brain injury from multiple concussions. He lives with regular headaches, brain fog, and sensory sensitivities. He recently went to a baseball game with his friends. One of his friends made a comment about how his brain injury must be healed because he was able to attend the game. Frustrated, John explained that he had to rest and avoid stimulation for days before so he would have the mental energy to make it to the game. Further, he knows he’ll have to rest for several days after, while he recovers from the repercussions of the outing. John feels as though being seen on one of his “good days” often invalidates what he goes through at home the majority of the time. 

Christie has fibromyalgia, an invisible illness. When she mentions her persistent pain, she’s met with comments like “you don’t look sick” or “you were fine yesterday”. Comments like these make her feel isolated and misunderstood. She often hides her symptoms, as it’s easier than explaining her invisible illness to people who may make ableist remarks or invalidate her experience.

How to explain your invisible illness to others

If you live with an invisible illness, you may know how difficult it is to explain it to others. Sometimes, sharing that you have an invisible illness can feel like you’re “coming out.” 

Telling people about your invisible illness can feel vulnerable, due to the lack of awareness. You may fear that they might respond negatively or with disbelief. Before having this conversation, remember that your condition is real, and a negative reaction comes from a place of ignorance on their part. Further, it is not your responsibility to educate this person (unless you want to). 

You may explain invisible illness many different ways. We’ve compiled a list of a few options, but you can get creative. 

Share your story about how your invisible illness affects you

If you feel comfortable, you can share the hidden challenges that you live with that are not immediately apparent to others. You can share as much or as little as you’d like, as long as they are open to it, too. However, be mindful that some people may be triggered by certain topics.

For example, you can share that, although you look okay right now, last night you had a spasm that kept you up for hours. Or, you can tell them how you’re feeling in the current moment (e.g., “I look okay but I actually have a 9/10 headache”). 

You can tell them about your condition and how you were diagnosed. For example, “I had severe abdominal pain for years and finally had a diagnostic laparoscopic surgery that found stage 4 endometriosis. So, although I look okay, I have several severe painful lesions throughout my abdomen.” 

This requires some vulnerability and trust. It may not feel like a valid option depending on how well you know and trust this person. But, there are other ways to explain invisible illness if you do not feel comfortable sharing certain details.

Share stories from advocates who have invisible illnesses

There are many chronic illness/disability advocates online who share their stories and spread awareness. You can share resources from these advocates to help you explain it better, or to support your own stories. 

The chronic illness community on social media is fierce. These advocates do an amazing job of being proudly visible and open about their experiences with chronic illness. You can share some of their accounts, or specific posts that highlight invisible illness. 

You may urge them to follow these people and learn from them. Understanding more than one person’s experiences may help to validate invisible illness. 

Another way is to show them a forum for people with your condition. In discussion forums, people share their stories and ask questions. This could be a helpful insight into what living with an invisible illness is like, without having to share your personal story. 

Send them educational resources from credible organizations 

There are non-profit organizations that aim to raise awareness for different conditions. They create educational resources to teach the public about the realities of the disease(s) they advocate for. 

You are not responsible for teaching anyone. If you want to avoid that role, refer them to a website with the information they’re looking for. Then, they can research on their own. 

Be sure that the organization you’re sharing is credible. The last thing you want is to unintentionally spread misinformation to someone who may not know any better. 

Use helpful metaphors to explain what invisible illness is like

You can explain your invisible illness using metaphors. Metaphors can help the person to visualize or imagine what it’s like, without having to share very personal details. 

One popular example of a metaphor for invisible illness is the Spoon Theory by Christine Miserandino. She used spoons to explain to her friend what living with Lupus is like. She explained that she had to ration her limited energy wisely. Each task used up a certain number of spoons, leaving her exhausted when she had no spoons left. The tangible number of spoons was a good way to show her friend how she was feeling, even though her friend couldn’t tell through observation.

Using Spoon Theory, you could say, “Today, I woke up with only 4 spoons. I used 2 to shower and get ready. Now, I only have another 2 for the rest of my day. So, I cannot do X, Y, or Z, as I have to save them for picking up my children from school later. Although I may look fine, I’m feeling really drained today.”

You don’t have to use spoon theory, you can get creative and make up your own metaphors for your situation. Further, the person you’re telling may understand better if you choose a metaphor that would make sense to them personally. For example, create a metaphor for invisible illness using plants for your friend who loves gardening. 

Conclusion

The general public can have a difficult time understanding invisible illnesses due to a lack of awareness. So, it can be challenging to explain how your invisible illness affects you. However, there are several ways to approach it. 

If you do decide to share your story, and work towards increasing awareness, know that you are doing something great for the chronic illness community. Regardless of the person’s response, be proud of yourself. Indulge in some self-care afterwards, it’s tough to be vulnerable. 

Sources

Brennan, K.A.M., & Creaven, A-M. (2016). Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus. Quality of Life Research, 25(5), 1227-1235. doi: 10.1007/s11136-015-1151-z

Dobson, J. (2021). Invisible Illness and Measurability. AMA Journal of Ethics, 23(7): E512-513. doi: 10.1001/amajethics.2021.512.

Kasian, M. (April 18, 2019). 15 Things People Want You to Know About Living with an Invisible Illness. Healthline. Retrieved from: https://www.healthline.com/health/what-you-should-know-about-invisible-illness#1

Pilkington, K., Ridge, D.T., Igwesi-Chidobe, C.N., et al. (2020). A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs. Social Science & Medicine, 265. doi: https://doi.org/10.1016/j.socscimed.2020.113369 

Schultz, K. (April 18, 2019). I’m a “Spoonie”: Here’s What I Wish More People Knew About Chronic Illness. Healthline. Retrieved from: https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1