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10 Things You Should Know Before Doubting Someone With Chronic Illness

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As someone living with chronic, rare conditions including eosinophilic esophagitis (EoE), a rare digestive disorder that causes vomiting, chest pain, and problems with swallowing, I’ve experienced many insensitive comments about my health. Many of them deal with others’ doubt and inability to understand what I’m going through. So here are 10 things I’d like others to remember when it comes to invisible illness:

1) Even though my illnesses are invisible, they are real and should be taken seriously.

2) You are not a doctor, and you do not live with my conditions. It is not up to you to decide how serious or painful my illnesses are.

3) Just because I “don’t look sick” doesn’t mean I don’t feel bad. It only means my conditions are “more on the inside” than out, hence the term invisible.

4) My generally cheerful demeanor isn’t because I’m feeling great. It is because I will live with these conditions all my life, and actively make the choice to be happy despite what I live with.

5) Even if I don’t fit into your personal standard of what a chronically ill person should look like, that does not give you the right to blame me if you decide not to take my conditions seriously. I am not trying to trick anyone into thinking I am someone I am not. I am me, and just living my life with invisible illness the best way I know how.

6) No, you are not entitled to my medical history or personal details about how my body functions. While it is great to ask questions in the spirit of wanting to understand more, it is not OK when I am treated as if disclosing my medical information is the currency I need in order to gain credibility, validity, or respect from you.

7) I shouldn’t have to provide “proof” to you in order for you to believe me. My medical history shouldn’t be seen as evidence, and you shouldn’t try to “test” it by secretly expose me to food I am allergic to, or bringing food into my living space without my knowledge. It is wrong and incredibly dangerous. Deciding for yourself what my exact limitations are is not appropriate.

8) Know that if you continuously downplay and discredit my conditions, I will in no way feel safe around you no matter how nicely you treat me in areas of my life that don’t involve chronic illness.

9) It is never too late to educate yourself on invisible illness and learn that it is a very real thing affecting many more people than you would realize. It is never too late to learn how to better treat and respect those of us living with it.

10) There is no universal face of chronic illness and no universal way we live with it and cope. No matter how we handle it, or look, act, or dress, we are all worthy of safety and respect.

Originally published: August 6, 2018
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