I’m just like you.

Before I get to the meat of this post, I want to preface this by saying that these are MY issues.  They relate to things people say to me, here and in the world outside my computer, but I’m not blaming anyone.  I don’t want anyone to feel like they can’t talk to me or that they have to tiptoe around my issues.  I write about this because it’s stuff I struggle with, and writing helps me find clarity.

Okay, on to the actual post.

I blog a lot about living with ulcerative colitis.  It’s chronic, it’s incurable, and sometimes it sucks a hell of a lot.  When I blog about it, I get called things like inspirational, brave, strong.  Those words make me squirm inside.  It’s a complicated issue, and my feelings come from several sources.

First off, I’m uncomfortable with compliments.  They challenge the view of myself that my family taught me, and that feels unsafe.  I know it’s not actually unsafe, but welcome to PTSD.  Parts of me are afraid that if we accept that we are strong or brave or whatever, our family will find out, and we’ll be punished, ridiculed, and shamed.  I’m better about this than I used to be.  Now, I can hear a compliment without arguing that it’s wrong or brushing it aside.  Most of the time, I can even see why someone would give me that compliment.  But it still makes me feel wrong, like I’m lying about who I am because if people saw how bad I really am, they’d hate me.

That’s my issue to work on.  That one’s all mine.  The rest are some combination of my issues and societal issues.  Still, I’m not blaming any of you for these.

Basically, I want to be like everybody else.  I want to be just a person.  Obviously, I want to maintain my uniqueness and selfhood, but I don’t want that to center around my illness or my response to my illness.

There’s a sociological concept called othering.  Basically, it’s human nature to divide ourselves into groups and classify anyone who’s not part of our group as “not one of us.”  This is a good basic explanation of it.  It’s an instinctual behavior and isn’t inherently bad, but it’s one of those chimp instincts that I think we’d do better if we outgrew.  (Seriously: chimps, upon encountering a chimp from another group, will literally tear it apart.  Their very close relative, bonobos, will initially be guarded toward the outsider but will eventually accept it, as demonstrated through grooming and sex.  I’m not saying we should have random sex with people outside our group or pick fleas off them, but we could learn from the bonobos’ ability to include the outsider.)

Setting a sick or disabled person up as an inspirational figure is a subtle and unintentional form of othering.  It says, “You’re not like me.  I’m not as strong or brave as you; I couldn’t deal with what you deal with every day.”  It sets that person up as better than the speaker, but it separates them.  Think of someone you think is better than you, someone you admire.  Now imagine hanging out with them.  When I imagine that–and it’s probably the same for most people–I imagine having trouble talking to them for fear of sounding stupid or weak or boring.  I admire them, but I have trouble being able to relate to them as just a person.  And I don’t want to be hard to relate to or talk to.  I don’t want people to be afraid I’ll think they’re stupid or weak or boring.  I just want to be a person, just like everybody else.  It’s hard to reach people when you’re up on a pedestal.

And it sets up these expectations that you always have to be strong or brave.  I don’t want to worry that I’ll disappoint or discourage people if I say I’m having a really bad day and everything sucks and I don’t want to get out of bed and I feel totally hopeless.  I want it to be okay for me to fall apart sometimes.  I want someone to say, “You don’t always have to be brave.  It’s okay to cry.  I’ll take care of you for a while.”  (This one is probably more my issue than a societal one, but there are societal components.)

The biggest thing, though, is I don’t want people to think they could never deal with what I deal with.  You could!  I’m really no different than you.  If you’d talked to me a year and a half ago, before I got sick, and described UC to me, I would’ve told you I couldn’t deal with that.  There’s a quote I’ve seen floating around Facebook that annoys me a little because it seems overly trite and inspirational out of context, but in this context it works: “You never know how strong you are until you have no other choice.”

It’s true.  UC didn’t give me a choice.  It just attacked.  It very nearly killed me, and that pissed me off.  Nothing gets to kill me without my permission, dammit!  So I fight.  I know the realities of my disease.  I’m on the severe end of the spectrum; I’ve been through most of the medication options currently available; I will probably end up having surgery for either a J-pouch or an ostomy.  I know what to expect, although not always when.  I know how to get poop stains out of mattresses and clothes (except the bright orange ones–those will NOT come out of my off-white sheets), I know how to act like I didn’t just crap my pants in the middle of a political event, and I now know how to buy adult diapers without losing my dignity.  You think you could never learn those things, but you could.  You might have to learn a lot of poop jokes to cope with it, but you’d learn the stuff that seems impossible.  Hell, you might even do better than me and learn how to get the bright orange stains out!  (If you have learned that one, let me know.)  I’m just like you, and you’re just like me.  You could deal with this if it were dumped in your lap.

I’m just a person; I crap my pants like everybody else.  (Wait, everybody else doesn’t actually do that.  Oh well.)

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9 Comments

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9 responses to “I’m just like you.

  1. Separate Parts

    “And it sets up these expectations that you always have to be strong or brave. I don’t want to worry that I’ll disappoint or discourage people if I say I’m having a really bad day and everything sucks and I don’t want to get out of bed and I feel totally hopeless. I want it to be okay for me to fall apart sometimes.”

    I wonder how much of that is us though. I used to feel that way all the time but then realized that it’s brave to reach out for help. It takes strength to break down and cry. Being honest about having a bad day takes more strength then talking about the good days.

    When I think back to some of the times I felt that my “weakness” was disappointing people, I can see that it was all me. Now I’m not going to say that society doesn’t put some of that out there. I mean, people with mental illnesses are still looked at as being weak or not having any control over their life. But most of the people that think that way are in need of serious therapy. They put others down to cover up their crap. My dad’s like that. He talks about everyone else yet he has anxiety and it’s really bad. He’ll never admit that he needs help and I think that is “weakness”.

    My physical therapist said something to me yesterday that rings true, she said “What’s normal anyway? As far as I’m concerned, no one’s normal.” If you think about it, she’s right.

    It used to bother me when people used to say that I was strong for dealing with some of the things I go through. I’m like you, just like everyone else and agree with the quote you got from Facebook wholeheartedly. But I’ve also learned to take it as a compliment. Because you know, when all is said and done, with everything I’ve been through, I’m still here…laughing (in pain…lol) but still laughing – I am a strong woman.

    • I think a lot of it has to do with the societal construct of “strong.” I agree with a lot of what you’re saying about what strength really is, but that’s not the mainstream definition/idea of strength.

      Like I said, some of this is my issues. I’m willing to own that, but I’m not willing to own all of it as my issue. I’ve done that for too long, telling myself that if something made me feel bad, it was all my fault. But it’s not all me. Some of it is that our society has some weaknesses that need to be spoken about.

      • Separate Parts

        Oh I agree with you about society and its idea of strength and I’m not saying that it’s all your issue. There are a lot of things about society that need to be changed and it’ll only happen if people speak out. I just don’t want you to internalize it to the point where it makes you feel like you have to censor what you say because it might come off the wrong way to someone else. That’s there issue not yours.

        Maybe it’s because I’m just blunt, or punk, I’ve never really paid much attention to societies definition of anything because most of the time it’s stereotypical and outright wrong.

        I guess I’m speaking from a wholeness perspective. I know what it’s like to be beat down all your life and internalize everything you grew up hearing to the point where it makes you feel like nothing or that everything that happens is your fault. I just don’t like to see other people going through what I went through or feeling that way about themselves.

  2. Learning to accept compliments if you have been abused is tough. At least I think that is the case. And I think there are tons of us with that issue. But when you can take a deep breathe and say thank you there is a wonderful rappour that develops. It was only when I started to do so that I could also say to myself that being me is not so bad. I still relapse but I feel so much better when I manage to be gracious in receiving compliments.

  3. Hi hope, i know I’m the guilty party who said that to you, and i’m sorry. Especially because i know from personal experience you do/can get used to anything, when it is that or die…My best friend joe lived with ALS, Lou Gehrig’s disease for four years, most of it on a ventilator, and i was there through all of it. He had no one else but the volunteers that i got for him and we called Friends of Joe.

    Anyhow, speaking only of what i thought i could never get used to, since the real suffering of ALS i can not know first hand, was the sound of suctioning. One of my only jobs as a younger person was in a hospital, and that sound was something i dreaded…thought i could never ever learn to deal with, that and profound coughing. But when joe lived on the vent, well, as you said, you learn to live with anything and deal with it. And once i discovered that suctioning made him feel better, i came to a whole ‘nother way of actually hearing those dreadful once-disgusting sounds: they were vacuuming his lungs free of the gunk that prevented him from getting air. It was a revelation, and made me see and hear thigns a different way. Since then i have had no problems with anyone making coughing or deep lung sounds. so again, i apologize, for saying that.

    And also, for making you feel like you had to be on a pedestal. I didnt know you well enough at the time,…i still dont! But i didnt want you to fall into…oh, who knows? You clearly know yourself well, and think about things too. You dont need me to buck you up!

    I will say this, on the matter of pooping in ones pants, however, that unless you do it really a lot, (ha ha ha) you don’t develop a way of coping with it with humor or otherwise! so those of us who just crap our pants once every two months or so, and i speak strictly of myself, i just don’t learn from it – or i haven’t. I just feel irritated, even disgusted with myself…no rhyme or reason to it. No treatment, no one even to tell. You see what i mean? Maybe that is the thing, if it happens all the time, you can adjust. But something that is so variable and rare just seems random. And since it isnt as devastating as a grand mal seizure which would be talk-about-able, you just clean it up and say nothing and hope it doesn’t repeat…

    Anyhow, i hope some of this makes sense, I’m trying not to beat myself up about making you feel bad, Hope.. That is hard, very hard to do, but its my shtick as you know…anyhow, enough from me. I should just learn to shut up…

    Pam

    • You don’t need to feel bad at all. This wasn’t aimed at any particular person–it’s been on my mind for a while, coming from various sources from blog land to Facebook to real life. And like I said, I don’t want anyone to feel like it’s their fault or that they have to tiptoe around because a lot of this is my issue.

      Never shut up. I like and value what you have to say.

  4. This post made complete sense to me, I liked it, kudos to you for writing it.

    As someone who HAS had to get poo stains out of mattresses and such, check out the following. It has worked wonders for that and all other sorts of stains:

    http://www.walmart.com/ip/Bissell-Little-Green-Portable-Deep-Cleaner-14007/9863572

  5. well… you crap your pants just like a lot of us 🙂
    I HATE being told how strong I’ve been… just because I talk strong when I see a stranger doesn’t mean i don’t have my down moments where I’m pissed and angry or crying my heart out. I fight because I have no other choice. And so would they. Loved your post 🙂

    • I’m glad you get what I’m talking about Sometimes I feel like I’m just being a bitch who rejects compliments, but I think I have good reasons. And I don’t reject all compliments.

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