Being diagnosed with a chronic and debilitating disease is truly a version of Hell. The term “being diagnosed” sounds so neat and sterile. There's so much more to it. There's sometimes a few years of worsening symptoms, which are painful and life-limiting and life-changing before ever getting an official title for the disease. I can tell you first hand, it is ugly; it is messy; it is merciless, and yes,it is Hell.
One aspect of it is the mental toll it takes on the patient, or victim. People say things like, “You find out who your friends are!”, and that's true. Not only that, you find out who your family are.
In a three year period, I lost my energy, I lost control of my legs and arms (thankfully only some of the time), I lost my career, I lost my marriage, I lost my home, I lost friends, and I lost the ability to believe family will stick with you, no matter what. Blow after blow and blow can really get to you. Nothing, however, hurts as uniquely or as deep as watching family turn their backs on you.
I had gone from being a high school drop out, to holding two degrees: one, EMT-Paramedic and the other, RN at a level one trauma center. I enjoyed my job, but couldn't continue to do it with the amount of fatigue I had to live with. I would adapt.
I lost my marriage. I guess I saw this coming, as I had realized (after extensive personal study and research) she was a narcissist. Getting out of that (un)holy union was actually a good thing for me. The stress she manufactured from constant manipulation, mind games, control and flat out crazy three day screaming binges was killing me. I had planned to beat it to the punch and kill my own self, but that's for another story.
I was losing my house,which I had invested heavily into; monetarily and with blood, sweat and tears, but in the end, it is just a “thing”. Luckily, I knew that “Things” didn't hold the key to fulfillment. It sucked, but I dealt with it.
Friends quit contacting me like they had. This really hurt, too but I could understand it. I could see how people tend to avoid things which bring them down. After all, they are still in the rat race and sometimes it takes every bit of positive energy to keep going.
One of the saddest things to me, was realization of how easily some family turn away from you when times are darkest and most frightening. That's when you're most isolated and alone.
An example is when I was going through my divorce, I knew my ex's ability to be evil yet convince people she was a saint. I had to go into damage protection mode, so I sent private messages out to a very few people I trusted the most. I asked them not to share anything about me with the ex, and briefly explained why I was requesting this.
It wasn't long before I heard that one of these family members I trusted had rejected everything I had said about the ex and instead took sides with her, saying: “I just don't believe she's like that. She seems so nice!”. Yep, so does the devil. This family member had spent very little time around my ex, yet took it on herself to campaign against me, and try to discredit what I knew first hand to be true.
A family member was in town, and I really wanted to develop our relationship. After all, we were family. I asked her to go with me to an hour long concert just up the road from me. I knew she liked music. Hell, she's one of the main reasons I have the love of music that I do. I said I'd come pick her up, take her back home, buy her dinner and the whole nine yards.
I got some of the most lame excuses I've ever heard from her. “Oh, I'm waiting on a phone call” on her mobile phone, and “I guess I'm getting old. Riding the roads really gets me these days” (good thing she has a brand new vehicle). But maybe she meant something else when she said the roads “get her”?
The following night, which was the night I had invited her, it turns out she was with another family member “riding the roads”. So, basically, rather than just be honest with me and say, “I don't really want to spend time with you”, she chose to lie to me. I'd much rather have truth any day of the week.
Now, if someone had done her the same way she had done me, she would hold a grudge for life. While I am able to do that, I try to not do that, especially with family. Maybe I held “family” in too high of regard.
One final example:
A family member as it turns out is telling other people that she won't be contacting me until I contact her because She contacted me first the last time. Well, first of all, what a tit! Besides that, it simply was not the truth. I had sent her a message just a few days before with the link to a video I had done. I thought she would appreciate it. (I think I've learned where thinking gets me). I was hurt by these things, but had decided to let them go.
I could see the message was delivered, and read. I got no reply, but instead got passively-aggressively attacked and falsely accused. Yes, it pissed me off. I guess more at myself than her, but a fair amount towards her. Especially because life for her is so fantastic. Don't misunderstand, I'm happy her life is now fantastic! It's the fact that my life has been the toughest over the past several years, and it was during this time I found out I couldn't expect any “being there” from her.
Oh yeah, all examples are from the same family member. She's pretty stubborn and probably thinks she's got me beat in that area. But if she had tried to be family to me, spent a couple hours with me, she may have gotten to know me. Maybe even liked me, as she (must have) pretended to all along.
Blood's thicker than water, but you damn sure can't make coffee with it.