I like to quote a scene from Tombstone when it comes to this topic.
“Doc.. you oughta be in bed, what the hell you doin’ this for anyway?”
“Wyatt Earp is my friend.”
“Hell, I got lots o’ friends.”
There you have it. I don’t.
If you’re really my Friend, you know about it. We’re close. We talk about important things, and feelings, and the difficulties of the day. Don’t misunderstand me on this… I’m acknowledging there are levels of friendship. I have what I would consider a few “casual friends” as well, but most of the people I interact with on a daily basis are acquaintances. We’re acquainted, we’re friendLY, we socialize, etc etc… but a close, true Friend is something else entirely. In some ways, I am an open book. I share a lot about my life because my health issues have created an important path in awareness advocacy, and that is where I put a lot of time and energy. Heck, it’s where I put most of it. Those topics are free for discussion pretty much all the time. I spend time researching and educating myself, the same as I always have from a very young age, because it is just what I do. I am well-versed in health topics not because I am just fascinated by it, or I made some random choice to be what they used to call a “health nut” when I was young, or because it is popular… but because it is my LIFE. Literally, this means my life. New acquaintances and readers may need time to get to know more about me to realize this. I do what I do because if I don’t, then I won’t be doing anything. It’s an easy choice for most people out there to have a junk food lunch, a pizza for dinner, drink a couple sodas a day, eat candy, and then work it off at the gym if that’s even what they do. It’s an easy choice to stay up all night partying with friends on the weekend, or watching movies, or lying out in the sun, even knowing you will probably get a sunburn.
Most people commit indiscretions on credit.
They deal with the consequences later. They take that lightly. Most get away with it too… for a while.
Indiscretions on credit is a game for the young and healthy. It is not something that I can allow in my life anymore. When autoimmune disease becomes a reality, your every choice is then dictated on a basis of both the immediate and the longterm effects it will have on you. That’s everything from staying up another 30 minutes at night to whether I drank enough water today. It’s which shoes I wear today, and for how long. It’s deciding whether it’s more important to do laundry OR wash the dishes, OR if I need to buy groceries, and will I have enough energy after any one of those to make dinner and eat it? It’s making sure I have on sunblock AND have a jacket because I might get chilled even on a warm day. It’s reading the label on every single freaking product I consume, because if I don’t, there will be any number of results – joint pain, muscle pain… stiffness… digestive upset… mouth sores… rashes… nausea… headaches… pick one. Do they sound like a good trade-off? They’re not. The really sucky downside to it is if you trigger a bad enough flare with irresponsible behavior, whether it’s eating garbage or UV light exposure, or over-extending your energy, it can do a lot more than make you “uncomfortable”. A serious flare for a lupus patient can end in organ damage. People do die every year from complications of the conditions caused by Lupus. I have personally lost Friends in the Lupus community to this disease. It KILLS. This is why I am all about awareness for Lupus (and women’s heart disease). This is why this is what I am all about. This is my life. This is the life of my friends.
We don’t have the option of committing indiscretions on credit. When it comes to our health-affecting choices, someone comes to collect immediately and with all the pleasantries of an old fashioned leg-breaker. In fact, he charges interest, collects the debt, and still beats you up. You don’t get away with anything when you have a disease like Lupus.
I post on this topic on my Timeline, and on my Facebook Pages. I post because I am educating the public that is not informed enough. I post because I am also assisting my fellow Lupies and other autoimmune brother and sister warriors. I am not the only person in need of whatever I learn about living better with these diseases, and more is my joy when I am able to help someone else. That makes it worth the hours of staring at material that is sometimes hard for me to process. Every little success that I share that worked for me, and even ONE PERSON comes back and says, “That helped. THANK YOU.” means the world to me. I don’t post anything that I have not personally researched, and done so with autoimmune diseases in mind. That covers everything from medical articles to news stories. You may not understand why I post something… but there is ALWAYS a reason. It may not apply to you. Try not to tear it down in your lack of understanding.
So this is why I am mixing this with the topic of friends and acquaintances. There have been a few incidents recently that make me feel it is necessary to say something. I’d like to just video this, to be honest, because I’d rather use my face and my voice so that people know I am being sincere rather than harsh. The problem is that I am really tired. I am in a flare, and I’m tired. I don’t feel like talking on camera. So just take me at my word on this. It’s important that everyone understand this about me. I do not add people to my Facebook “friend list” very often. Not everyone gets to stay either, to forewarn you. If there are too many problems, I clean house. I live with several stress-triggered diseases and I am working hard to maintain as peaceable an environment as I can to maintain my health. I’ve put people on the Restricted list before and I’m sure it will happen again. It gets annoying though, because I prefer not to… and I shouldn’t have to worry about how someone will react and speak. In fact, a lot of the posts on health topics I prefer to place on PUBLIC because I am trying to reach… the public. It doesn’t matter if it’s on my Timeline, or a Page. I use both. My point is this.. If you’re new and you don’t know me well yet, you need to take a breath and wait until you do before pouncing on a topic unaware. A lot of what I post is for the specific benefit of the other autoimmune patients that I know and am close to. Those are the people I am lending an assisting hand to with information on a daily basis – the ones whose needs are very much unique to this type of health condition. Nothing that I share in that arena is arbitrary or alarmist. I don’t grab random stories off news sites for the heck of it. There is always a reason.
I’m tired. I dislike debate. I makes me nauseated. It causes me pain. It’s unpleasant. So if you have the spot on my friend list… cut me some slack. I take the middle ground on a lot of things in life. I am neither Democrat nor Republican, and I find the idea that we are actually still stuck in a bipartisan framework repugnant. I am not religious, but I am definitely spiritual, and I am a traditional First Nations woman but with a great deal of respect and personal investment in Asian philosophies and studies, from martial arts to the Tao. I am capable of choosing my own directions in life while not trampling where others go. I form opinions on some subjects, the same as anyone else, but for the most part I’m going to keep a lot of that very quiet… except for those Friends I mentioned; the ones whom I trust so dearly. When I do share something more in-depth, or have a rant about it, it’s uncommon and if you can see the post then you’re being entrusted with something. Take a second to consider that before you speak. Because I really do not mind anyone having a different view on something in life (as long as it does not cause harm)… but honestly, if it’s just to debate the thing, you’ve got your own Timeline to post on. If it’s truly a discussion, then there is no need for yelling, or being dismissive of anyone, or assumptions about my motivations. I’m sitting here shaking my head with a heavy sigh. I’ve dealt with that far too much.
For the record as well, since this keeps coming up from different places, I am not autistic. I do not have autism. I do not have Asperger’s syndrome. I never said anything to anyone to indicate that. If you don’t understand what the autistic spectrum is, it’s easy enough to look up and I’m not going into it here. It runs in families, and it runs in mine, and it’s a pretty broad base of various issues including things as simple as dyslexia and ADD. That was all I discussed with a few people a long time ago, and someone decided to take off with it from there (someone that isn’t even involved my life anymore) and invent their own story around it. I would never claim something that I don’t have. That’s ridiculous, pointless, and unnecessary – as unnecessary as spreading unfounded rumors about me. I keep telling people… you don’t want to do that. I will find out. I always find out. It might take a while… but I will find out. So just stop. Thanks.