A lot of people, just assume that I'm doing fine all the time, because yes I go out, yes, I have a good time. But they all know what happens when you assume things....Look at the spelling, and if you still can't figure it out, then we can't be friends lol jk jk. But in all seriousness, Yes, I do go out, because what else would I do then? I either go out in pain, or sit at home doing nothing in pain. I'm going to be in pain either way. When I was little, I used to pretend I was a princess, and dress up. Well now, I play an adult version of pretend. When I go out, I am able to "pretend" that none of it exists. I can live the life I've always wanted to live, taking precautions of course. But can I do it all the time? No. My life came to a screeching halt, on October 23, 2005. And it has tried to restart. But restarting your life, is somewhat like trying to restart a lawn mower after you’ve been using it nonstop for days. You pull the string, and sometimes it works, but sometimes it doesn't. Sometimes it works but only for a few seconds. But sometimes it works for as long as it takes to mow your entire yard. But then you need to turn it off and let it rest for a while. Sometimes a few days, sometimes a few weeks. Could you imagine what it would be like if we felt like sh!+ and looked like sh!+? Atrocious, it would look atrocious! .
I quite honestly, never understood the term "Invisible Illness". I'm a natural science major, I only like concrete things. Things you can prove. I know I have hydrocephalus and a whole host of different problems, and as long as I knew that, it was all that mattered. After I got sick, I hated the fact that I had an invisible illness, because I thought it meant that I had to prove I was sick. I can remember, basically 3-4 hospitalizations where they told me in the ER, we can see nothing physically wrong with your CT your ventricles are actually smaller than they should be, so that could be the problem, but it’s not life threatening, so there is nothing CLINICALLY wrong with you. I felt so defeated, because I knew there was something wrong with me. I could feel it, you could see my entire demeanor had changed, so it must be true right? A lot of people accuse "spoonies" like me of faking being sick. But in reality, we are faking being well. And we must be doing a pretty good job, if you think the opposite.
No my double life isn't sexy or mysterious or even crazy, well it is crazy but not in the way you're thinking. I've been pretending to be well, when in reality, I can't even go from a sitting position to a standing position, without stopping first and letting myself equilibrate. But I can't do that at work, no never, so I turn the corner where no one can see me, and then let myself equilibrate. Am I lying to all my colleagues? Maybe. Then I go to my pain doctor, and let her know my symptoms, of course since she knows nothing about neurosurgery, she's freaking out.... "OMG you need to call Dr. Frim... I nod, and say I will. But do I? no. I just come up with an excuse to use next month, such as my favorite, "Oh he wants to watch it before we change anything." Although I think she might be catching on... I know I have a problem, But I also know it's not life threatening. And so do I want to sit in clinic for 5+ hours for him to change a setting? no. But if things get remarkably worse? Yes then I will go in. It's a very delicate balance, it's like standing on a teeter-tawter(And I know I spelled that horribly wrong) and trying to ride it like a surf board, but there are already people on it. You just can't win them all.
I've never really been much of a liar. Not because I'm little miss perfect, but quite frankly, because it's too much to remember. So why would I be lying about my health? For my own emotional protection. People always want to know how this is effecting us emotionally, and for me, it isn't, or it's effecting me the least amount, because I do admit, I keep myself in that little imaginary perfect bubble for my own emotional protection. When people ask me how I am doing? Unless I'm physically dying, I will always say I'm "ok". That's a spoonie's go to word, because it doesn't mean you're good, but it also doesn't mean your sick enough to be in bed, hating the world.
So what can you do? Be there. Believe us. I realize that being able to believe us when we go out and live a semi normal life is difficult. But maybe it’s not for you to understand. Maybe it’s not even for me to understand. For all I can do is accept it. Listen to our pain. Because that’s the only way you will ever be able to see it.