I don’t even know where to start with this.
Just about 2 hours ago I posted this on my FB page:
“I just keep telling myself that I have to keep trying. If I don’t keep trying then I will never find the things that work. If I never find the things that work then I will never get to a low pain life. Sometimes though, it is SO HARD to keep trying.”
First you should know that I rarely post anything about this stuff on my personal page because I don’t like to sound like a whiner, or that I am looking for sympathy. But this has been really hard for me these last few weeks and so I posted something. I was reaching out, generically I will admit, but still reaching out I suppose. I was surprised when I got a few comments right away. Not surprised about the comments, but more so surprised by who wrote them. Simply because these ladies and I don’t speak much so it touched me when they immediately saw my need and comforted me. (Thank you ladies).
Ok, back to why I don’t post stuff. I don’t post stuff because people don’t get it. They just don’t. They can’t see it, they don’t understand it and it isn’t something that is widely publicized like AIDS or Cancer so they assume it isn’t all that bad. Or they start to ask questions and then lose interest all together and simply bail out of the conversation. So, instead of putting myself through the hurt and frustration of trying to prove to someone why I am justified in my feelings, why all of this does actually suck, I just don’t put it out there at all.
Every once in a while I think that this would be easier if I didn’t hide it from people. If I was just open about it to everyone so that I could build my support system and maybe feel a little less lonely. When this happens I post something, much like the post we are discussing now. The first few comments made me feel good, like this was a good idea. Aaaaannnnnnd then the private message came. And now I am reminded why I don’t share my secret with people. They just don’t get it.
*Note* I am not hardly the passive aggressive type. If there is something bothering me you can be sure I will let you know to your face, quite openly. So, usually in this situation I would simply explain to this person why I was upset. But I see this as an opportunity to explain myself.
The exchange was short, and I am sure she though she was being supportive, but she was far from it. The first message simply asked if I was okay and that she hoped it wasn’t what she thought it was. Immediately I though to myself “She thinks I have Cancer.” After another exchange my intuition was confirmed, she indeed was worried I had Cancer. After I briefly explained that while I don’t have Cancer, this is in no way easy and-most likely- not 100% treatable she wrote :
“That sucks, gotta just have a strong mind and tell yourself it doesn’t hurt………. at least it’s not Cancer.”
Does anyone have a hole I can crawl into for a while? Would anyone else like to tell me how I can simply just “tell myself it doesn’t hurt”? Would anyone else like to tell me how fucking lucky I am that I don’t have Cancer? If you do, let’s get it over with now, because to be honest this is probably the last time I can handle hearing something like that.
Now, I have the utmost respect for anyone experiencing any kind of disease, condition, ailment etc. and I am not saying that PCS/CPPS is the same as cancer. What I am saying is that while some are indeed worse than others they are all difficult, and they all cause some kind of hardship to your body, your mind, your emotions and your life. Including me. Including this thing you can’t see, and have probably never heard of and don’t understand. I watch my son deal with Autism, I watch my loved ones battle Cancer, Asthma, Depression, Anxiety, Lupus and MS. Each and every one of them suffer and struggle and fight to live life around this thing that makes their body betray them. Every single one of them, and me. and me. No, I don’t have Cancer and I am not going to die from this. My body isn’t going to completely shut down on me and force me to leave my family behind, but that doesn’t make it a walk in the park.
There are things I can no longer do, there are consequences to the procedures I have had, the medications I take, and there are so many, many things about this condition that no one even knows about yet. No one can tell me how my life will be 15 years from now, or if this will get worse, and take more things away from me. Isn’t that scary too? Don’t you think that if I could just tell myself it doesn’t hurt I would? Do you suppose I enjoy giving up things in my life that I used to do every day?
I understand that some people are sheltered (for lack of better word) and that they’ve never really experienced any kind of hardship and maybe that should make this easier to take. But on a day when I am feeling particularly lost in all of this, the ignorance of the conversation just hurts.