by Nia G.
Fact Checked by:
Jennifer Chesak, MSJ
by Nia G.
Fact Checked by:
Jennifer Chesak, MSJ
Some of the most difficult parts of living with chronic illness are the aspects that others don’t see.
Many aspects of chronic illness aren’t fully visible or discernible based on limited interactions or appearance alone. Yet many people still believe that chronic illness, and illness in general, should have a look or a certain type of behavior that’s clear to see and notice.
This can be incredibly frustrating for those who live with chronic illnesses, as we’re often judged for outer appearances or for things that people may see us doing rather than how we actually feel.
This can result in accusations that the person with chronic illness either isn’t as sick as they are or isn’t trying hard enough to get better.
Even more frustrating are the double standards that can go hand in hand with these ideas. If someone doesn’t act “sick enough,” they’re doubted and stigmatized. But if someone is resting, and canceling and avoiding certain activities due to their symptoms, then they’re told they can’t be “that sick,” surely?
There’s no “correct” way to look or be with a chronic illness. But stigma exists because of the limited, filtered presentation of chronic illnesses to outsiders. Some people make little effort to look deeper.
It can be very difficult to demonstrate that, actually, there are a lot of parts to chronic illness people never see. There’s often an upsetting feeling that we have to “prove” this and our conditions to others.
One way that we can lay this out is by comparing what someone will see on the outside to what someone with chronic illness is actually experiencing on the inside.
By contrasting outsider and personal perspectives, we can shed more light on the impact of chronic illness on a person’s life and emphasize the fact that it’s not always evident. Here are some examples:
Another person will see: Someone going out and socializing with others.
But won’t see: The pain and exhaustion they feel after doing so.
Another person will see: Someone canceling or seeming unreliable.
But won’t see: The guilt and frustration they feel about having to cancel.
Another person will see: Someone dressed up with their makeup and hair done.
But won’t see: The energy it takes to get ready and the symptoms behind their appearance.
Another person will see: Someone working or starting a business.
But won’t see: The career opportunities they sacrificed and how draining any work is.
Another person will see: Someone resting, staying in bed, and taking naps.
But won’t see: The frustration, guilt, and boredom over being forced to rest their body.
Another person will see: Going to many doctors appointments and procedures.
But won’t see: Fighting to be taken seriously, access appropriate care, and facing medical gaslighting.
Another person will see: Saying no to things, giving things up, and doing less.
But won’t see: The grief, sadness, and anger about the memories and experiences we lose.
Another person will see: Someone studying, attending school, or college.
But won’t see: The difficulty in keeping up with assignments and integrating into student life.
Another person will see: Someone using mobility aids, disabled parking, or disabled seating.
But won’t see: The symptoms someone is experiencing which make them worthy of those aids.
Another person will see: Someone being upset, angry, tearful, and emotional about their illness and assume that their symptoms are all psychological.
But won’t see: The psychological impact that living with 24/7 symptoms has on someone.
Another person will see: Someone smiling, laughing, acting “normal,” and seeming energized.
But won’t see: The symptoms and pain that person is feeling in that moment, and the energy it’s taking to mask them from others.
Another person will see: Someone changing their diet and being “picky” about their food.
But won’t see: The symptoms and consequences that someone will face if they eat the wrong thing.
Another person will see: Someone accessing accommodations for their condition.
But won’t see: The difficult battle to acquire these accommodations, the other times this support has been rejected, and the symptoms that make those accommodations necessary.
It’s so important that those with an outside perspective remain mindful, empathetic, and considerate of the fact that some of the hardest parts of someone’s life with chronic illness are the parts that you might never see.
If you live with a chronic illness, sharing this and similar lists with those in your life to help them understand what they see of your experience is not the full story can be helpful.
As this article has highlighted, many ideas around how conditions and illnesses should appear are deeply stigmatizing, don’t make much sense, and end up contradicting themselves. Remember that you don’t have to look or act a certain way for your condition to be valid.
Fact checked on September 15, 2022
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About the author
Nia is a chronic illness and disability advocate from the United Kingdom. Living with many conditions herself, Nia founded The Chronic Notebook platform on Instagram in 2019, now with 18K followers and growing. Since then, she has used The Chronic Notebook across online channels to spread awareness and educate others on issues around chronic illness and disability. In 2020, Nia won the ASUS Enter Your Voice Competition, receiving a grant to fund projects related to her work. Nia continues to work with charities and companies with illness and disability as their core focus.