What I Need Others to Understand About My Life With Chronic Illness

Understand every single action or lack thereof requires extreme planning. Is there a restroom? Will I have to stand? How far will I have to walk? How long will I be in pain if I participate? What medications do I need to bring?

Understand I fake being well. When you tell me you hope I “feel better soon” or I “look fine,” it only sheds more light onto the fact that there is no better. I spend every day being part of the best play ever written, where I win an award for best actress. The only difference is, it’s not a play – it is my very real life that is being played out in front of my eyes.


Understand that as much as my illness may inconvenience you in the workplace, as a family member, a friend or a spouse, my life and body is an inconvenience to me I did not choose. I am merely a marionette whose strings are being pulled by an invisible puppet master.

Understand your health advice is not news to me. I am a professional patient, who spends the majority of my time in doctors’ offices being poked and prodded, and I still have to find a way to pay my medical bills for things no one can diagnose. If it is a theory, I have heard it and have probably tried it.

Understand that if you are a medical professional who is not a specialist and do not know what my condition is, I would rather you ask me questions and express interest instead of treating me like a liar or a pill-seeker. Listen with an intent to understand and empathize.

Understand that even though I do not want my illnesses to define my life, they are now what makes up every piece of me. They are what continues to chip away every little piece of hope I still hold on to. They are the things that determine my mental health and stability. They are what determines how every single day for the rest of my life will be.


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