Invisible illness/chronic illness/disability…..I have learned in over 32 years that I can not change people’s perceptions of what it is. It is like trying to tell someone how bad your finger hurts that you just hit with a hammer and they have never experienced that. They can think they know. They have their own “perception” of what it feels like and it nowhere near matches the real feeling. And yet, we keep trying to “educate” others on what it is like. And there is no way to do that. We can create a little more awareness but when we try too hard we run the risk of sounding like whiners…another perception.
I have learned that perception is the main problem. It is not necessarily the other person’s perception that is the problem but our own. As long as a person does not out-and-out say to me “you are not sick” then what they think does not bother me for I know it is a flawed perception. It is what I think or perceive for myself that I have had to work on. It is my own perception of myself that makes life harder for me because I am allowing that perception to be distorted by what others think.
I just read a great example a few minutes ago. The person was talking about brain fog which is almost impossible to explain unless you have experienced it. But in the description they said “sometimes I feel like I am expected to always get everything right 100% of the time like I’m never allowed to make any mistakes” and this is a perception that most Invisible illness/chronic illness/disability people have of themselves. Often we perception that we must measure up to what others who are not sick think of us and they have no idea what we go through. It is like we are setting a standard for ourselves that is impossible to meet.
For years when I first became sick, doctors and people and family treated me like nothing was wrong. And so my perception was that I was somehow not measuring up and I pushed myself to be “normal” and in the long term….made myself sicker. I would push myself harder to go places and do things because “others” would make me feel guilty and make me feel like I had to do it. I was allowing myself to be manipulated by the thoughts of others. And then one day, I woke up and thought “why????” and started questioning why I was doing that. Why was I constantly talking about how sick I was, why was I always trying to prove how sick I was and why was I allowing myself to push myself beyond what I was really able to do and thus damaging my health further? It is because of the perceptions of others..whether they be doctors, family or friends or even strangers….and how we let how others perceive us become our standard for what we should be or do instead of realizing we were no longer at the same standard as a healthy person. We have a new bar , a new level and that bar changes constantly for us.
It is so important that we believe in ourselves and we KNOW from our tests and diagnosis what is wrong with us and when someone acts like we are not that sick, then ignore them. You can not prove to doubters that it is true. Even as sick as I am not, I occasionally get the person who will tell me I do not look that sick and I now do one of two things. I either look at them and say “Thank God for that because if I looked as sick as I really am I would scare everyone around me” or I smile and say “yes, and isn’t it great that I don’t look as sick as I am” and turn away. Change your perception of how you view yourself and do not let someone else set the bar for you. You know what you can and can not do and do not need someone else to decide for you. There is not a rule written anywhere that says we must live up to what others around us think.
And most of all, set boundaries. If you have a lot of people around you implying that you are not that sick when your records show you are and you know you are…then start pushing them further away from you. Do not let those that bring feelings of negativity or feelings of doubt of your own illness too close to you. It takes all we have to fight what we have wrong and do not need to fight other people’s perceptions too. And we especially do not need to set ourselves up by allowing our own perceptions how sick we are to be tainted by another person’s standard. It is their perception but we do not have to take it on as our own.
Work The Dream 