Last week was Invisible Illness Awareness Week and this month is both Disability Awareness Month and Dysautonomia Awareness Month. I live with all three of those things. I thought it would be fit to write about an aspect of my illness.
I am a very open person when it comes to my illness in almost all aspects except for admitting (sometimes) how I am feeling. I hate showing my vulnerable side but I am learning that it is a huge part of having an illness. I hide how I feel for many reasons.
I do it because I love you. I do it because I don't want to make a big deal out of nothing. I deal with these symptoms on a regular basis but it doesn't mean that I am used to it. I will never be used to it, even though it is (sort of) a part of my norm. I don't know if this will makes sense but we will never be used to feeling like crap we just don't expect to feel good because we feel so bad on a daily basis. But I will still use the terms 'used.' I do it because I don't want to worry you or bother you. In other words, I don't want to be a burden. I hate being a burden. I am the type of person that likes to help others in any way I can. I could go on and on with all the excuses and reasons as to why I just don't want to show how I am feeling.
Sometimes I do vocalize it or can't help but fall down or lean on something. That's when you see it. That is when my invisible illness is visible and I am then vulnerable. After I can let my vulnerable side show in front of certain people it makes me feel more comfortable for some reason.
I know I am not the only one with an invisible illness that feels this way. Sometimes we are just so 'used' to feeling like shit that we would rather vocalize when we feel good. We are the type of people that didn't know there was a problem until someone told us. "Wait, you don't pass out and feel crappy all the time?" I would ask people. "You don't get really dizzy and collapse to the ground in confusion?" It was my 'normal' without even realizing it wasn't other people's normal. This was because of the excuses. I was stunned. I was somewhat baffled. I just thought I was having a lot of head rushes. But nope. There was much more going on.
Now that I am getting into the background of why I, and I am sure others feel like sometimes it is no big deal. We didn't know that what we were going through wasn't normal, only at a subconscious level. I think it is because we didn't want to admit it to ourselves
When I told my doctor he was like, "Why haven't you told anyone about this?" It is because it was somewhat my norm. Although, I didn't know that my norm was about to get much worse. My symptoms began to get worse and that's when I got concerned. That's when I started telling someone that I needed help. I saw my symptoms affecting my everyday life and they started to become debilitating.
Long story short I went through hell and back to get diagnosed and treated. Young women don't get taken seriously as they should when it comes to health, but that is a whole other article. I learned that in a huge way.
I am the type of person that will either leave the party early or just suffer through it and not tell anyone how I feel. It depends on if I have choice. And when I say party I mean anything really; it can be an event, the room, a class, etc. If I have the option to leave when I don't feel good I am going to do it unless I feel like I am going to miss something big. And when I leave I probably won't tell you why unless you ask. Instead I'll make up some lame excuses like, "I am tired and have to wake up early." That is probably the most used excuse ever and it is sometimes true but most of the time it is because I don't feel good. Or I am just sick of you...
Sometimes it can be hard to hide how we are feeling when you feel like you are going to pass out or if your losing your balance. Or I'll just feel so terrible that I need to say something. Or I don't have control over me falling to the ground. That is when I do say something. Overall, I will try to hide it unless I think it is better to tell someone what is going on. I put on a big smile for you and to make things less awkward.
Thoughts? What do other people living with chronic illness think? Do you experience this too?
