I enjoyed my recent holiday but I also felt limited by it. I wanted to do something and it was quite beyond me to do it. It is frustrating in that sense. I paid the price for doing what I did. But the Oska is helping me with that flare up. Just having a problem knowing where to put it. Ankles, knees, back, shoulders and head, oh my! I need three of those Oska Pulses! I’d be set then.
It is a very hidden illness though, but oh so felt. So people could not see the pain I was in when I was on that hike. The more we went the more pain I had. And there they are just strolling along like it is no problem. I envy that. Often in these situations I move slower and slower as the pain gets larger and larger. And I get Looks. Looks that say why is this perfectly healthy young person walking so slow? I ignore it because I just need to get where I am going so I can rest. That becomes the main fundamental goal. I didn’t push that hard this time, but I did push too far.
We in general choose what we want to reveal though. We don’t have to tell everyone we meet we have fibromyalgia unless we have reason to. If not, we don’t have to unless we feel like it. It is the nature of an invisible disability. We can keep it as private as we want to.
And we can conceal as much as we want to as well. Hide pain, mask it, have a façade… in order to function in certain settings or at work. Or to comfort our spouse so they do not think we are hurting as bad as we are. Or to make ourselves feel better. By masking it and smiling and joking around, we ourselves can feel like we can get through the day better. Like we are tricking ourselves by not focusing on the suck of the pain. And it works. I do it all the time.
It is a game of revealing and concealing. We are in control of how much we reveal and how much we conceal. And that makes it a lot different from an visible disability. However, sometimes we struggle with when to reveal and how much. Do you reveal to a perspective employer and when? Do you reveal to someone you are dating and when? When you share with friends, how much do you share… what level of sharing is acceptable? I often feel that people do not want to hear the full depth of the experience nor would they comprehend it. Either way, we all have to make these choices on what to reveal and when in certain situations.
On the flip side, we feel isolated because we feel that no one understands what we are going through because we ‘look fine’. And we feel when we do try to express it we are ‘complaining too much’…. we feel that way, hard to say if that is what others perceive. So we have to communicate this disease to people we love. That is important. And to our loved ones, including close friends. We need people who understand, on some level at least, what our lives truly are like.
It comes down to your own comfort level. Who you tell and how much you do tell. How open a person you are, to how reserved you are. Or if you are a private person or not.