.I have a couple friends (yeah, I know, that in itself is a miracle as far as I can figure lately… I’ve been having a very “just want to crawl into the closet and cry” kind of time lately and I wonder that anyone wants to be bothered being my friend. And before the people who ARE my friends take exception to that, I know it is something in MY head and not real and I’m working on it) who have assorted illnesses or conditions. One has cancer to a great enough degree that they have had to put a porta-cath in her chest for the industrial strength chemo therapy. One has lupus and several other associated things that cause her many issues. One has epilepsy and chemical sensitivity that causes her many problems to a degree seriously enough that shopping can be a debilitating adventure… AND she is allergic to chocolate… what kind of “fair” is that? I mean really? CHOCOLATE… geeze. Then there are my babies who both have epilepsy and neither of whom is actually a baby any more. My mom is a breast cancer survivor. My uncle and my two great aunts didn’t… My wicked awesome niece is Aspergers. My little girl is bi-polar.
SO I have these friends… Some of them are nearby and I can actually sit with and share a real face to face hug and a real cup of coffee with. some of them are scattered across the country and I visit with virtually.
Add in to the mix that I have RA/Sjogrens/Raynauds… so I guess that makes me one of the ‘defective’ group. Maybe that is why I look at things the way I do, I’m not sure… but it really really upsets me.
Why is it that no one wants to sit down with us and enjoy a cup of coffee and some awesome conversation? Why do people not text us or call us or let on that we are alive? People who used to call us friends now go out of their way to avoid us unless they are backed into a corner? And then they act like they are doing us SUCH a massive favor… and they call in that MASSIVE favor when they think they can.
I am not my disease. I have RA, but it isn’t contiguous. I might catch whatever you might have, but I’m smart enough (usually) to take precautions to try not to get anything that you might have that is catching, like a cold or the flu. I know to be careful because it is my “disease” and my doctor has told me what to do and what I need to be careful of.
I don’t chase you off. I treasure the time we spend together. And you know, no one can catch anything over the phone. FROM the phone, maybe but not from someone on the other end of the phone. The same holds true of text messages and emails and instant messages and facebook posts.
I promise I’m not going to beg you to donate your last pint of blood or your liver or anything. I want to feel like I’m not the most horrible person in the world, I want to feel human. Having a chronic condition, especially if it is one that is ostensibly “invisible” is depressing enough. You don’t have to help the depression along by acting like I’m the biggest burden on your world. I already feel that way. It really wouldn’t kill you to sit and have a cup of coffee or tea or scotch or wine or even water. I promise I didn’t spit in it. And if you are that worried, text me, call me, whatever.
I know that it is hard to see me like this. I know that you are scared to death that you might someday be in a similar position… but you know what, pretend you might be and think of how you might feel.
I know I’m weird. I try very hard to “be there” for people because I know how they are feeling. I know how horrible it feels to have people you “matter to” who don’t remember to even bother to wish you Merry Christmas (no card, no text, no email, nothing) but who will start texting you when it is a week before THEIR birthday. I know that your heart breaks when the stupid beepbeep noise doesn’t go off for days on end. I know what it feels like to look at the top of the screen first thing in the morning to see if there is a little red number next to the message picture. I know how desperately it hurts to not be able to vent to anyone.
It’s okay. I’m here. I will be here. I will be as here as I possibly can be and you can depend on me being here unless there is a really really good reason I can’t be but I will be back.
you have friends because you’re a great person April. Doesn’t matter if you’re far away…I know you feel like shit too,but you always to try to cheer us up. I cant explain how this makes us feel. Ok,um…I’m going to start crying now,so I going to stop. Hugs to April,cause you deserve them.
No crying. Smile! Hugs!… Yeah, I know… sometimes tears are all that work… but hugs later… maybe Abby hugs!!!!
I know EXACTLY how you feel:( My last post was about this kind of thing.
I am going through the exact same thing. Just know that it does feel like shit and you are validated. Just try to keep giving love. You will get it back(at least thats what I hope;))
hugs to you…
I’m counting on it. doesn’t always happen, but when it does, it makes me smile.