To a PWC Friend Whose Family Doesn't Understand
A response to a letter on the SASYFRAS support email list.
Oh, I relate. On one level, use this list as a place you CAN talk about the illness -- so at least you do have an outlet.
Most of the time when I'm with other people, I feel like I did when I had a little one at home -- all I knew or wanted to talk about was baby stuff. Or later, when I was both writing my dissertation, and vice president of the ladies auxiliary of the little league -- I would get tired, and find myself babbling about kids to historians (BAD idea -- we were all in our thirties, and they didn't have kids yet; it made them perceive me as a housewife, GOD forbid) -- or babbling about history to the other Little League wives (blank stares, or worse, someone would think I was trying to "show them up" with the fact that I was working on an advanced degree). Or when I had two months to go to my dissertation defense, and was madly finishing the last draft, and the little league moms called and wanted me to organize the refreshment stand for some all-star game (it was in August, after the season was over), and I said, Look, I just CAN'T -- they didn't understand that even though I didn't go off to an office for an eight-hour day, I had demands and schedules and deadlines.
In other words, I guess I kind of got used to living in a world that was all partitioned, with very few people who could understand or wanted to hear about anything on the other side of THEIR partition. So not being able to talk about the one thing that is CONSTANTLY on my mind -- my health -- and the state of my house -- is sort of normal. As in, normal that I didn't have very many friends outside my family -- LOTS of acquaintances, but not very many friends.
And I don't have the mental strength now to come up with conversations that will do in those situations. So I just sort of space out. Sometimes I'll think of a joke. Most of the time I'm quiet and just watching all the activity.
I don't know what could possibly possess someone to call you at midnight and say those things to you. We get people do that to each other online, too. I think it's a type of repressed anger, or perhaps passive aggression -- something in your condition makes this woman uneasy or unhappy and she doesn't know how to deal with it. Or -- the problem I have from time to time with my husband -- the full reality hits her of what your life must be like, and she can't deal with it; she feels guilty, survivor's guilt -- and the only way to deal with it is to blame you for it, distance herself from you. It's YOUR fault that SHE's uncomfortable and guilty.
I can explain these things, but it doesn't help much when it happens. All I can say is if she ever does it again, or when someone does something like that, say -- fine, I get the message, I will not talk about these matters with you any more -- and hang up. Refuse to talk about it with her. It is something inside her, not something in you.
But I know it hurts.
Our culture does not do a good job of teaching people how to live around illness. We cope with disabilities by saying -- there's nothing "wrong" with being disabled; these people are really "normal" -- the implication being, if we could classify them as somehow abnormal, it would still be okay to dump on them. Being chronically ill -- really ILL -- is not allowed. No one knows how to deal with it.
You read old novels, or old diaries, or I used to read letters when doing research on the eighteenth century, and they were ALWAYS around people who were chronically ill. It was a part of life. Only a family that was totally destitute would leave an invalid alone or uncared for -- and then the Church or the local wealthy were supposed to step in and take care of the person. It was a sin to abandon an invalid.
Maybe "guilt" is the wrong word. Maybe the right word is "shame". I want to say sometimes, have you no shame?
No. No one has shame in our society any more.
Well, so very sorry that happened to you. I hurt for you. And for all of us.
But at least, we do have each other.
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