I am the first person to say I won’t hide or downplay my chronic illness because I don’t believe anything good is gained by keeping people in the dark and yet, I often find myself doing it without thinking.
Explaining and educating people, in general, is difficult. It takes so much energy and brainpower to think of ways to explain what’s going in a way that makes sense to people when often it doesn’t even make sense to you and you are living it. It would be so much easier to lie and say everything is okay, but it’s a complete lie.
I find that it’s better for people you work with, family and friend to know you are struggling with an illness than having people notice your frequent absence, cancellations or your medication intake or the way you walk funny, etc. and have them draw their own explanation. Trust me, rumours and assumptions are always worst than the truth.
I have come across many people who don’t believe me or think I’m exaggerating my situation, both at work and in my personal life. People tend to doubt that things can possibly be that bad. They also assume that you are doing much better if your pain isn’t physically apparent.
I refuse to let people’s bias force me into secrecy. When somebody questions something so undoubtedly real, it feels like they are questioning my integrity and it hurts. I find that repeating helps most people understand. You won’t win everyone, but it will be harder for them to make a fuss if most people know what’s going on.
It may be easier to pretend that things aren’t as bad as they are because most people don’t really want to hear it hurts. I don’t volunteer the information to everyone, but when asked how I’m doing, I will be honest. Hiding because we’ve internalised the belief that people generally don’t care is very damaging.
Some believe that it’s my fault I’m still sick. I didn’t take care of myself, I ate or drank the wrong things, I didn’t do enough exercise, etc. The medical specialists told me this illness cannot be caused by any of these things. So unless you are a medical professional, I really don’t care what you think.
Where I often find myself downplaying my symptoms like pain, fatigue, nausea, frustration, anger, depression, etc., without thinking about it is with my family. The main reason why I find myself instinctively downplaying my illness is for the people I care most about is that I know that they believe me and they worry for me and I don’t want to be a weight on their shoulders. I don’t want to scare them or annoy them. What they see is already pretty bad.