Wednesday, June 27, 2007

This post over at Beauty Offensive reminded me of a conversation I had to have with Sister J recently. (I'm sorry: I know some of you are still a bit confused about which sister is which and whatnot, but I can't find my taskbar - with the family tree post - yet. I have done something to screw it up. I'm workin' on it. In the meantime, Sister J is 24 yrs old, recently engaged and moved in with her fiance, the sister directly below me in our prestigious line.)

Following the whole "Suck it up" debacle, I had some... intense anger issues. Specifically directed toward my family. And the fact that they were - possibly, at this point - talking, behind my back, about the fact that I was "exaggerating my illness." We've talked about it here, but I think you can all imagine how painful it was for me to think that they were all discussing this amongst themselves.

But I didn't know for sure: All I had was Soon-to-be Sister-In-Law's not so wonderfully rambling e-mail. This was not exactly proof. And I found myself in a peculiar situation:

I wanted to know if it was true; but if it was true, I didn't want to know.

I really spent a while debating with myself because I wasn't sure how I would handle it if they were all thinking I was overstating my realities of living with chronic illness.

I have been sick for 13 years... which means I was a teenager when I first got sick. And - after the initial worry - when my health just kept deteriorating and the doctors had no clue what the hell was going on, many of my family members had a lot of doubts. Whether it was because I was young, or because CFIDS/FM wasn't really known, or because it was so sudden & dramatic, or .. whyever really: there was a lot of disbelief. Some of the things that were said to me, & done to me, & said about me during those first three years or so, were incredibly painful. I was mocked. I was made to do things that were physically impossible (for sick-me), and then punished if I didn't complete them. I was doubted and taunted and picked on. Some family members thought I was a druggie, or pregnant (although how they could keep thinking that 13 months later, I don't exactly know), or hiding something, or faking. Just plain faking.

To be fair, my sibilings - the worst offenders - were thirteen years younger then too - making the oldest two, 18, and the youngest three, 12, 9, and 7. To a 9-yr-old, the idea of an illness doesn't always matter; Not being the center of attention anymore, does.

I already know what it feels like to have to defend your existence to the people who are supposed to love you unconditionally (ha!), and it's horrid. It's difficult and demeaning and so incredibly hurtful. And I didn't want to have to do it again. So, I put it off.

And, I put it off. And I fumed, and pouted, and was generally disagreeable (in my own subtle way). Eventually, though, I knew I had to find out.

Sister J and I were home alone one day, and I decided that she would be my best bet to have this discussion with for three reasons: 1) We've grown a lot closer in recent years & I felt comfortable enough to bring it up; 2)She's honest - to a fault, to the point of rudeness, to the extreme; and 3)I knew I would probably cry, and since she's an easy-crier too, she would still listen to what I was saying.

I started the conversation by skimming over S-T-B S-I-L's e-mail, and what it said, and how I was upset by it. She was also furious, intially, & disbelieving. She was supportive and pissed and all the things only a sister can be when somebody messes with their sister.

But when I asked her if it was true that the family discusses me, and pretty much has come to the conclusion that I'm a big faker, she got kind of quiet.

And I got really angry. And when I get angry, (or upset, or emotional in anyway,) I tend to cry.

So I rolled myself over to the window, let the tears fall silently, and listened to what she had to say.

She said that nobody thought I was faking, but that maybe, sometimes there were doubts about the intensity of certain symptoms, or how long they lasted. Or that sometimes they talked about how I could probably do more than I was doing, or that I was sort of just passively not taking all the steps necessary to get better. Because it's been thirteen years already, and I'm obviously not better (and have in fact gotten worse over the course of the past 7 or so), so there must be more I could be doing, but wasn't.

Which is basically what Soon-to-be Sister-in-law said as well, and to which, I must again reply: Fuck that!

I'm sorry: I don't use language like that often, but there couldn't be a better place. And I literally said it to her that day, in tears, trying not to throw-up.

And then I said that there was no one more aware of the fact that it had been 13 years and I still wasn't better. There also wasn't anyone more aware of the fact that I have been doing every single thing the doctors have told me to do (and a million other things in between)for the past 13 years. And I may have ranted on a bit here about how if they ever asked questions, or came to my doctor's appointments, or did research on their own, they would know that my diseases are CHRONIC and largely untreatable (to date).

I also said that if there were any exaggeration on my part, it would be that I downplay how horribly I really feel in order to make it through the day. Because if I let my body dictate what gets accomplished, then I would not move more than three inches in any direction on any given day. (I may also have sworn some more. But not alot, because I was too busy crying. Which I HATE... that's a whole nother post.)

BUT ---> and here's the part that actually fits in with that Beauty Offensive post <---- then we started to calm down and listen to each other. And she started to cry, too, as she was telling me that basically, it's easier for her (for them) to think that it's somehow my fault: To think that there's something more I could be doing, but just haven't done yet.

Because if they don't think that, then it's true: I really have these horrible diseases, and they aren't getting better. And they aren't going away. And then they have to mourn the sister that they want to have - the sister who can walk down the aisle as maid-of-honor rather than roll down; the sister who isn't stuck living with our parents at 28; the sister who is the world's best auntie and mother; the sister who is happy and healthy and not held back - and deal instead with the sister they really have - who, she insisted, is not a bad person. She's just a sick person, and that's not how they want me to be. (Um... can I give a big fat "DITTO" here?)

And as much as I would have liked to have told her to stuff it, I understood what she was saying. Because I was there too: I had to accept the fact that these diseases are a part of me, and there were/are times when I didn't. So I could understand how it would easier for them to just blame me... because then, I could fix it.

And I told her that. And then I told her this:

"I can't fix it. I can do everything I'm supposed to do, everything there is in the world to do, to get better - that's my responsibility. But I'm still not guaranteed to get better. Because hasn't worked so far. And no amount of positive thinking or pulling myself up by the bootstraps, or voodoo or praying is going work for me. Because I am SICK. And you just can't talk yourself out of SICK.

"I am sick," I told her. "And you are making it harder for me. Because I can't lean on you, I can't depend on you, I can't feel loved and whole and safe with my family, if they don't believe in me.

And that's not fair.

It may be easier for you all to blame me, but it makes it harder on me. It makes me less able to do the things I have to do everyday, because I know that there's no one completely on my side.

I need you on my side. We can both hate this situation, these diseases, my genes, the lack of funding and research: we can sit all day and hate those things together.

But you can't doubt that I am doing everything in my power to get better. You can't think that I'm exaggerating, or milking it, or sitting by passively, because if you believe those things, you aren't paying attention.

You aren't being supportive. You aren't being the family I need. "

And she agreed.

AGREED, people.

So, then we cried some more, and hugged ("Hug it out, Bitches!"), and talked some more. She promised no more smack talk about me being sick (sisters always smack talk about something, it just can't be about that), and that she'd pass on what we talked about, and how she feels about it now.

And it was a hard conversation to have, but I'm glad we had it.

I'm glad I can be sure of her, and that she's sure of me.


fluttertongue said...

I once mentioned to my sister that I was looking to get a wheelchair to make it easier to get to and fro (I have ME) and she scoffed and told me off for stealing wheelchairs from people who needed them. The way I've dealt with it is to move away and never discuss it with them. Alas, I can't afford this so I have to move back in with them in July but I'm dreading it. Their expectations of me mean that I expend all my energy trying not to look lazy.
I'm very glad you managed to bring your sister round. You may be in pain but that doesn't mean you are useless as a family member. In fact it means you can probably empathize more and understand others problems.

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Maya's Granny said...

You constantly impress me with your courage. This has to have been a most uncomfortable discussion to have. Hard things to say and to listen to.

I am so proud of you. You did it. And, I'm so pleased that it led to a good place.