I’mma gonna be all serious here. Sorry for those of you who are only here for the cookies and beer.
I said I was going to write on this some time ago, and well, I’ve had a lot get in the way. Not exactly pleased with that. But I guess that’s the way things are. I’m still struggling with that whole balance thing. In more ways than one, unfortunately.
But I’ve been having conversations with people and reading others blog entries on being chronically ill and how it influences our relationships with other people.
I’ve found that there have been two main types of people that I’ve come across. Those that are there for the good, and those that are there for the bad.
Everyone wants to be there for the good. Hey, who can blame them? The good times are fun, full of cookies and beer and ice cream, ponies and kittens and rainbows. It’s a blast.
But, in life with active chronic illness, the good times never last. They come and go. But they’re never permanent. And when they go, the people that were there for them often go with them. These people are not rainy day people.
Again, can’t say I blame them. The rainy days aren’t fun. These are the days of waiting rooms, and tests, and scans and pills, and appointments, and waiting. Lots of waiting. These are also the days of tears and frustration and anger. Hell, if I didn’t have to hang out for them, I wouldn’t.
However, there’s people that come in for those days too. The people that sit in the waiting rooms for hours on end, holding hands and whispering soothing thoughts. Who reassure you that things will work out. These people love these dark hours.
But then, when things swing back up, they disappear. For some reason, they just don’t seem to stick around for the good times. They seem almost disappointed that things are getting better, that you don’t need them any more.
Those who fall into both categories seem to be few and far between. Yes, I have people who will accompany me to appointments or who have met me in emergency rooms when things have worsened beyond medication management and we needed to make sure I wasn’t bleeding internally. But I’ve found, unless it’s something that’s going to mess me up so I can’t go alone, it’s easier to go alone.
It’s easier than listening to complaints about wait times or lines or do they really think that they know what they’re doing this time. Listening to how if you would just go back to being who you were 3 months ago…because you know, if it were that easy, I’d do it.
I’ve found some people who are there for the achievements and the failures. Most of them either are patients themselves or really really care about someone who is. People who understand what it’s like to be betrayed by their own body, to have to fight for things that others take for granted. People that have dealt with their own setbacks and faced diagnosis on top of diagnosis. One thing I’ve gathered is illnesses seem to like to bring friends to the party.
It’s through these people that I grow, that I find support and hopefully give support back. It’s where I start finding the courage to share my story. Even if right now, it’s in bits and pieces scattered throughout various mediums.
I keep telling myself that I want to live my life more transparently, as I can’t help anyone if I am not willing to share where I am and where I’ve been. However at the end of the day, fear keep pulling me back. I know I’ve grown and changed, and I’ve begun admitting that to those that I’ve grown closer to, those where I had no fear of judgment. But to open up to the rest of the world, to most of my world, still terrifies me. I’ve already lost so many people because I just couldn’t keep up with them. I don’t want to lose anymore. And I’m afraid of people seeing into my soul and seeing what lurks within.
But at the same time, I know I need to let go of the veil. As much energy as it takes to live with a chronic illness, it takes more energy to hide it from everyone. That I need to stop putting on my game face and lying to those closest to me about how I feel. That even though it may seem easier to smile and say, I’m fine, it’s slowly killing me inside because each time, I want to look at my family and friends and scream, No I’m not fine, and if you’d actually look at me for longer than 2 seconds, you could see that I’m lying my ass off.
I’m working at stepping out of the shadows. And for those friends I can be myself with, and be accepted, I am eternally glad.
Today is also #givetothemax day. So for anyone wanting to help out to this wonderful cause, please go 
