Monday, November 21, 2011

A rant about the "normals" that don't understand

An issue recently has been brought up to me on Facebook, and I feel very strongly about it,  and i know other people with Ulceritive Colitus, Crones, and other Intestinal disorders can surely agree.

The issue is when people ask you, in a semi-polite, rarely actually curious way "What are you doing now with your life?"
This can come from old teachers to classmates to friends to etc etc, but it still is touchy either way.
Right now in this economy, even given good education and good health--guess what's happening? Don't be a douchebag. Look at, look at CNN, look at BBC for news. No one's got fucking jobs, asshole. That's why the economy is tanking, along with a billion other things, so don't judge all of us who can't even find work at a McDonalds.

Secondly, and most importantly, whether the "normals" understand it or not, battling a Chronic illness, at most times, is nearly a full-time job. You think of us as lazy, maybe you think we just lie around watching soap-opera's all day. To this notion, I give a hearty FUCK YOU IN THE FACE. ------>

The anguish of just trying to nibble food and then having to run to the bathroom throughout the day because of it, because of your condition, is heartbreaking. Curling up on the floor in pain, weeping because it seems the stabbing in your guts will never stop, wishing yourself into death because of it--This is no life. This is just anguished continuing suffering. If everyone "normal" could remember back to the time they had the flu maybe, or when they ate someting horrible: well, it's like that 24-7 times 1,000. Every. Single. Goddamned. Day for people trying to battle this shit. And surgery? It fixes some things--even alot! Don't get me wrong! But afterward, your life isn't magically changed into a "normal" person's life.

My friend is a First Lieutenant in the army, and every summer he vists me. So summer 2010, he took me out in his car, saying we were going dancing. Nope. We went to his friend's house, where I met this tall deep-voiced shy young man with a scruffy beard and an Austrian accent, and... and I had to meet his mom. It was fine, randomly having a parent crash the party of three young kids getting-together, but she kept grilling me about why I wasn't in this or that University, why I was a failure for not having this or that job, and didn't really like that I told her I finished most of my University classes in accelerated courses while I was still in High school, and, in fact, graduated from my Prep School a year early because of my grades. (I had a disease that kept me out of sports and parties and extracurricular activities of all kinds. Of course I studied hard. It was all I had :( :(
In front of my Lieutenant friend and this new tall boy, she kept grilling and grilling me embarrassingly, not caring that I was obviously uncomfortable with the questions, just wanting to shame me for not going the path she thought everyone should go out of tradition.

If I had known her better, I would have turned to her and been like "Hey lady? Guess what. I've struggled with a birth defect my entire life that has left me basically incapacitated for over 15 or 19 years. Sound Fun? I've been going to hospitals once a month since I was 9. For surgeries, for adjustments on my TLSO back-brace, for tests, for cultures, for god knows how many things. I've spent weeks at Mayo Clinic in Rochester, MN, where they starved me for a month on nothing but clear liquids so they could run a damaging banister of tests on me. My heart stopped. I went into cardiac arrest when I was 18 after all these tests. I was lucky to survive, but I'm still not okay. I have to take medication for my heart every day. I can barely eat anything I want. I still struggle with just daily living that you take entirely for granted. So yeah--I don't have a job right now. I'm not at a University. And yeah! I'd be lucky to just live like a bum even--maybe they aren't in constant agonising pain that drives you to think the only solution is suicide. So FUCK YOU. FUCK YOU IN THE FACE, AND FUCK YOU IN THE HOLE I'M GOING TO POUND THROUGH YOUR CHEST IN MY FEROCIOUS ANGER."

Go ahead and judge me, cunt. Just go ahead.

Anyway, this bitch became my mother in law, as I married the soft-spoken kind tall man, but she never once stopped judging the shit out of me. She works in the health-care field too, so you'd think she'd be a little more sensitive, but no. Every single chance she'd gotten, she's told her son, my hubby, to get away from me, that I was just a sickly piece of crap that would drag him down, that with my illness, I was worthless, that I would never provide her with grandchildren that I would never be able to hold a job, and so much more, over and over, where even the father, when I told them we were getting married, he was so disgusted he even mimed that he was going to vomit.
My hubby's family is so unlike him, it's amazing he came from them, but they have truly and honestly hated me from day one, and even more so once they found out how ill I was. Even through my surgeries, they kept trying to get my Mr B to leave me, to just walk out the hospital room where I was, to just leave and never come back.

To this, I say: I am not worthless. I have many talents, I have a big heart, I have a lot of love to give that obviously you lack you cunt asshole. I am a human being. I am a daughter, a wife, a sister, a writer, a musician, a singer, an artist, an animal protector and love-love-lover!!, I am so many things that your puny mind couldn't even conceive the wealth of all the love I have to give.
Now I can talk a lot of shit in writing, sure, but I'm actually pretty soft-spoken myself, and I don't say hurtful things to other people. I just don't. I haven't acted like a good Buddhist in my writing. It's angry and full of cuss-words many times, but I know in person, these people that ask you thinks that hurt your feelings, or people that even outright mock you for your conditon, they are just confused, they are just saying things offhandedly without really "thinking" about it. Sometimes they are scared, too. Sometimes they feel like they can't handle the seriousness of what has happened to you. Sometimes they feel dumb that they don't understand.
So to these idiots, to these small-minded dumb superficial people, just shrug. Give your response with a flightly smile. Pretend you don't care. Say "Oh you know, just hanging around" "Just surviving" or change the subject quick to the weather. If they keep pressing on, just keep telling them, "Oh odd-jobs here and there" "Just doing what I can to get by" and try not to talk about your illness at all, if you can, as it just confuses the tiny little rat-people.

I'm sorry for the rant, but i have lived with these questions so much for so long, and though I have mostly gotten good at giving vague-passing answers, sometimes I still get angry at them.

How do YOU deal with these kinds of questions??


  1. I usually found that if I explained what ulcerative colitis really entailed, I got sympathy. Of course, I went 5 years without any flares, so I lived pretty normally for the most part. It's been harder this year since I had a 7 month long flare-- I found myself having to explain it a lot more.

    Now that I have cancer, people are VERY understanding. Funny how that one word changes everything for people. Chronic illness (especially one people haven't heard much about) is definitely more of a challenge for other people's reactions.

    Of course, I have 2 preschool aged kids, so I don't need to worry about why I'm not working-- I'm a stay at home mom (not that I'm the one taking care of my kids right now-- I have other people around all the time because I'm not able to do it myself)

    I can't imagine having to deal with that attitude from your mother in law though. Ugh. You have soooo much sympathy from me. Does your husband spend much time with his parents or has he cut them out of his life for being ridiculous? I hope he doesn't subject you to her cruelty very often. (It doesn't sound like he does)

  2. OMG TLLF - its as though you're speaking from every fibre of my being on this subject. This brought tears to my eyes - I'm ever so sorry to discover that you too have been judged like this honey. So undeserving. Sadly, I'm reckoning that this occurs to many other souls battling with long term illnesses too :'( As if the illness itself isn't enough to contend with hey? Shame.

    Its true, folks that make those kind of derogatory & judgemental comments cant possibly have the slightest inkling of what it FEELS like to be chronically & severely ill, that it takes all our energy sometimes just to get up, shower & brush our teeth!, let alone anything else some days!

    One comment for me that seems to put a cork in it when I'm being besieged in the way that you describe, and Lord knows hopefully helps the penny drop a little too!, is when I say something along the lines of: "You know, I'm ever so grateful that you don't seem to comprehend what its been like for me (why I didn't achieve this or that) because that indicates to me that you've not experienced being ill like this, and I wouldn't wish that on anyone, especially you." ;)

    And you're so, so right Darlin', right at the top of the list of things we can be grateful for is that because of our conditions & suffering we've become compassionate, empathetic souls & its steered us to spirituality & creative outlets :D Mustn't forget to mention that I feel that, ironically, some or even most healthy folk can't ever really quite appreciate good health to the depth & breadth that we do?

    Much <3 to You, Always ...

  3. To nessabutterfly~ nah, thankfully, Mr B and I are moving out of the country (yay!) and before, he lived overseas for a great portion of his life in Austria, Germany, and Czechoslovakia. So we try to avoid her usually, but as right now, she lives fairly close and is a constant nagger about picking up her every phone call and giving us all headaches.
    But the word "Cancer"--while so scary, is, as you said, so much easier for people to understand and wrap their heads around. It's just like having a brief infection, or having a long-term ongoing one that just never seems to stop. As it hasn't prevailed and taken over most people's lives, they JUST DONT GET IT.

    my good and healing thoughts for you,
    <3 Tinylittlelifeform<3

  4. Pythonette~
    I recently connected with a girl who, in a small words on her FBook update, said similar things. She is battling UC, and unfortunately, much of her female side of the family have passed-on beofre the ripe "old" age of 30 because of it. It seems anyone battlnig chronic illness has had this inner dialogue to the inevitable judgements that crop up :/

    I LOVE your comment, "I'm ever so greteful..." Funny, and awesome!

    How are you doing recently, btw?


  5. I saw that you mentioned before that you were moving to Vancouver-- it's beautiful there-- I grew up just an hour inland from there and am in Seattle now (after 7 years in Florida-- so glad to be back in the northwest!).

    I still get insensitive comments even with the cancer-- mostly just because people don't understand though-- they usually at least *try* to be sympathetic.

    I've actually had the most problems with people's attitudes with my allergies-- like people telling me to take a Bendryl and eat what is offered. Um, do you want me to die???

  6. Awwwh, thanks TLLF! Am faring not too badly at all post stoma reversal - thanks for asking!

    Had been prepped for the possibility of 10 - 20 bowel movements per day but really I've been so impressed & very grateful with how wonderfully well my remaining intestines have been performing - nowhere near those alarming & what I'd imagine to be crippling numbers - occasionally even the same number of bathroom visits as 'normal' people! Just a few glitches & 'accidents' here & there, but with the aid of a few doses of loperamide to slow things down, I don't really mind having the odd what I call 'reticularse' (reticulated arse) as it sure beats the agony & myriad complications of Crohn's any day!

    My TPN feed was ceased last Wed., and depending on how my bloods are next week - fingers VERY tightly crossed! - I'll be finding out this coming Wed. when my Hickman Line can be removed. Yay! (Am not even going to use the word... shhhhh... 'if' )

    <3 & the Best of Wishes Always xox

  7. To Nessabutterfly: All the very, very best of prayers & wishes to you too Darlin' in your healing curve.

  8. Hey there TLLF. Just wanted to make you aware if you weren't so already, that your blog has dropped off and when trying to access it in the normal way, a message from Blogger pops up stating: Sorry, the blog at has been removed. This address is not available for new blogs.

    I was able to finally still locate & access it in a roundabout way by thinking laterally.

    Hope all is OK? Should you have chosen to have your blog removed yourself, whilst that would be so sad to see it go for myself, & many other visitors am sure, of course will totally respect that, thank you ever so much for absolutely everything so far, wish you the very, very best, and leave you in peace hon. Just let me know. But just thought to let you know in case there's been a stuff up somewhere along the line.

    xox <3

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  10. P.S: Just one last mention - dear God please don't let your Blog being removed be because of what am feeling it might be - that maybe someone who has insulted, deeply hurt & made life difficult for you because of perceived failings & harsh expectations of you in their imagination, not fully sympathized with & taken into account your lifelong health challenges & suffering, & in fact perhaps even judged you BECAUSE of it instead of giving you due respect for the beautiful soul that you are & having survived it all, has complained about your post? My Lord, that would be the final insult Darlin'.

    Love & support to you <3

  11. Ok, so I stumbled across your blog by way of Lucy's Corsetry. I read the post she linked and was immediately intrigued with your story and started reading from post 1 working my way to the present. There have been so many posts I've thought about commenting on but as they're 4+ years old now I decided to wait and tell you in one of your more recent post how fucking hilarious and brave I think you are. This post however brought me to tears and I just want to hug you. Fuck those stupid fucks and I can only hope that, as I continue reading, things will get better with them!