When you say nothing at all
I get a lot of emails from people who read here explaining why they don’t comment. Many of you have told me that you just don’t know what to say sometimes, and I get that. I read a lot of sites that I don’t comment on. Sometimes it’s because what I’ve read leaves me speechless (I somehow doubt that’s ever the problem here, heh) and sometimes it’s because I don’t have words that can help, or that even can make a dent on what I’ve read.
I’m the first to admit that it’s hard to know what to say to someone who’s going through tough times, even when you’re going through them yourself.
And so I sat down and tried to come up with suggestions of things to say (though I certainly never require comments), and honestly I can’t come up any. Because, dudes, it’s difficult, I totally get it. So I’m going to take the other route.
These are the things you really shouldn’t say to someone with a chronic disease, pain, or frankly anyone. It’s also known as the list of things that people say that make me want to smother them with a pillow full of nails:
1. “You look like crap today.” A friend of a friend said this to me a few weeks ago, and I need you to be impressed with the fact that I didn’t smack the crap out of her. I almost feel like I shouldn’t even have to write this one out. Frankly, it’s NEVER nice to tell someone they look like crap, even if they do. And understand that if I look like crap, I probably feel 10 times worse than I look. In general, I’m pretty decent at hiding my pain, so when I can’t, I’m miserable. Telling me I look that way is DOING IT WRONG.
2. “You look fine, it can’t hurt that much.” Really? Because judging by your face, you must be in a ton of pain. Or at least, everyone around you is.
3. “It could be worse, have you heard about so-and-so?” I see the need for perspective, I really do. Perspective is important, not just for people who are chronically ill, but frankly, for everyone. And please understand that I feel for anyone who experiences pain, whether mental, physical or emotional. But that said, hearing that someone else is in pain, or has a life situation that’s worse than mine, doesn’t change my pain. It’s like if you were just run over by a car and I said, well, it could be worse, have you heard about Joe? He was run over by TWO cars. I’m sure you’d feel better right away.
4. “You just need more sleep.” Of course I do. Who doesn’t? But my head doesn’t hurt for lack of sleep. I’ve had weeks of vacation where I’ve gotten as much sleep as I could possibly ever get, weeks that were completely devoid of stress, and yet, were still filled to the damned brim with pain. I got 10 (crappy, interrupted) hours of sleep last night and as I write this I am miserable. My head doesn’t hurt because of lack of sleep. But my ability to cope with it does, so don’t be a jackass today. It won’t end well for you.
5. “If you’re in so much pain, why did you do x, y, or z?” This one bugs the bejeezus out of me. First, the tone says that you think I’m lying about pain. And being called a liar is one of my favorite things. Recently I have gotten crap from a number of people for going on vacations. And I’m completely perplexed by this. I have chronic pain and therefore I shouldn’t get to go on vacations? I don’t deserve to relax? I mean really. But it’s not just vacations. My head hurts all the time, but I am still going to go out to dinner, I’m going to go to a concert next week, I’m going to do anything I can manage. Is it stupid? Probably. But having chronic pain doesn’t mean I can’t strive for normalcy.
6. “Maybe if you didn’t think about it, it wouldn’t hurt as much.” Sigh. Let’s do an experiment. Go grab the biggest hammer you can find. Take a full swing and slam it down on your big toe. Now, don’t think about the pain. That should make it all better.
7. “Maybe it’s all in your head.” Maybe it is. And maybe next time you get a cold or the flu, you should see a psychologist before any other physician. Even if this pain is all in my head, it doesn’t mean that it doesn’t hurt.
8. “My mom/aunt/cousin/dog has headaches and they don’t have to miss school/work.” More power to them, really. I greatly admire people who deal with pain better than me. I wish I didn’t have to miss school, I wish I could cope better, I wish I had less to complain about or was more able to dial back the whining. If you think I get pleasure out of whining, you’re wrong. But sometimes I need to know I’m not alone and sometimes I just need to acknowledge how bad things get. I know it’s not very peasant for everyone else.
9. “It’ll probably get better when you stop going to doctors, that always happens.” Yep. There’s obviously a direct correlation between headaches and time at doctor’s offices. They have been shown to cause low pressure in most patients. OR NOT.
10. “It’s always something with you, isn’t it?” It’s true that I have had more than my share of health problems. It’s true that the list of symptoms is long. But this particular comment is the absolute worst. Even when said in jest, it makes me really upset. I can’t quite put my finger on why, but it makes it seem like I am choosing this, like I have control over this. And if I haven’t yet made it clear, I am so profoundly out of control in all of this, that it’s driving me literally near to crazy. Okay fine, way past crazy. Whatever.
But the more I think about all of this, the more that I think about all the nice things that have been said the more I realize that the very best thing that anyone can do or say, is just be here. Is to just let me know that I have someone to rely on, someone who cares. You don’t ever have to say exactly the right thing, hell, you don’t even have to say anything at all, just be here.
And not telling me I look like crap. That one’s pretty important too.
107 Responses to “When you say nothing at all”
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Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
Is it trite/tired/old to say I’m sorry, or that I’m thinking about you? Because I’m one of those who don’t comment often due to uncertainty as to what I should say. Somehow “I’m sorry you’re going through this. ” seems inadequate (never mind repetitive), but I *am* sorry you’re going through this and I *do* think of you (and yes, I *do* make when I read because I’m a dork like that).
ANYHOW.
I’m sorry and I’m thinking about you and I wish I could fix it/give you some relief. <3
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Katie Reply:
May 13th, 2010 at 7:16 pm
It’s totally not trite to say sorry. Not at all.
To be honest, anything said with good intentions is appreciated. Unless it’s telling me I look like crap.
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I have a bad tendancie to write you a personal note rather than comment, partly because what I say is private and the rest is because I haven’t come out of the brain closet. Meaning. Hardly anyone knows my brain is falling out. So here we go. Katie. even though your posts often depict a scary painful journey, even though my daughter is closer in age and interests to you than me. Your posts, show perseverance, and determination that has helped push me to be ” more me” your an inspiration. I thank you, privately and publicly.
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Katie Reply:
May 13th, 2010 at 7:18 pm
That’s perhaps the loveliest thing anyone has ever said to me. I love having you as someone who “gets” a lot of what I go through. In public and in private. Just so you know.
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I have chronic pain too.I also have a congenital heart defect that has caused some issues It sucks balls. I do not comment enough here because I always think my words sound small to say I am sorry every time here. I know you wouldn’t think that. I have low self esteem when it comes to my writing.Even if I don’t comment I do think about you or maybe I just think of ways to steal your cat.
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Katie Reply:
May 13th, 2010 at 7:21 pm
It does suck balls. Your words are never small. And right now, our cat is on the top of my refrigerator in a gatorade box. He’s sneaky, he’d be hard to steal.
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I read and rarely comment. Mostly? Because I don’t have enough words. But girl, you know I love you.
And dude, I so want to come up with good comebacks to each of those “helpful” comments. Now that? i am great at.
And hey? On yesterdays post, which I also just read. You’ll be there. Two years…may not be easy, but I know you’ll make it. I have faith in you.
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Katie Reply:
May 13th, 2010 at 7:23 pm
By all means, come up with good comebacks! I tend never to be gutsy enough to use them, but it’s always nice to have a witty retort for those few times when people are douchey enough to deserve it.
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I wasn’t going to comment until I read the last one. I was a sick kid. Just the constant ear infection, cold, flu kinda catching kid. Not chronic illness kind, but the last one used to bug me so much. I would come back to school and get told that with an eye roll by like 20 people.
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Katie Reply:
May 16th, 2010 at 9:18 am
How did I miss this comment?!
I think the sick kids get a bad rap because of the kids who miss school often for nothing. As a teacher it was always hard to tell who was really sick and who was just avoiding school. I worked really hard to never be harsh with any of those who missed a lot of school, but when one mom told me her kid had missed my class 11 times in one quarter because she was tired, a little of my sympathy may have slipped away.
The eye roll. It speaks volumes.
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You’re very pretty today, Katie. And smart.
People really say these things to you? Don’t tell me – most of these things are said by family? I can only imagine that being in the pain you are makes it that much harder to ignore them. Gah! Smack them!
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Katie Reply:
May 13th, 2010 at 7:25 pm
People really, truly do say these things. Some are family, but classmates and internet people are also guilty.
I’ve never been particularly good at ignoring unkind words, but I’m slowly learning. Very, very slowly.
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I read your blog a lot and also do not comment because like the first commenter it just doesn’t seem right to say I am sorry you are going through this even though I am sorry that you are. I agree with everyone else that the comments are stupid, but I know it can be hard to ignore them. I always get the “it’s all in your head” because of my depression. You do however inspire me because I have been around you and honestly if I did not know you from your blog and twitter, I would have no idea what you do go through because you do carry yourself so well. *hugs* I am proud to say I consider you a friend.
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Katie Reply:
May 13th, 2010 at 7:29 pm
Aw Kel, me too, I’m so glad to have met and been able to spend time with you. Hopefully my life will ease up and we can spend more time together eventually.
I hate the implication that depression is just something you can get over. The only people that believe that are the ones lucky enough to have never felt it.
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Thanks for posting this. I come here sometimes and read your writing and I don’t have one good thing to say. Everything just feels like fluff or worse.
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Katie Reply:
May 13th, 2010 at 7:30 pm
Never underestimate the power of fluff. Especially if it’s marshmallow based.
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1. You look freaking fantastic.
2. I’m sure it hurts like a mofo.
3. sure, it could always be worse but it doesn’t make your current situation any less important or relevant or sucktastic.
4. Me too. (the more sleep part)
5. You are doing what’s working for you and you’re doing it well.
6. I will not hit my toe with anything thankyouverymuch, but yeah, your example.
7. well, technically, it is all in your head…
(i hope that sounds as funny to you reading it as it did in my head)
8. dude, you whine exponentially less the most people in far less pain.
9. no, but you should go see some obscure doctor across the country and google everything in creation cause that DOES totally work on mystery diagnosis.
10. you didn’t choose this. no one would. but you’re living your life with it – in spite of it – more fully then some people who are perfectly healthy.
sorry people suck ass. but all of us over here really dig you and are pulling for you.
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Katie Reply:
May 13th, 2010 at 7:33 pm
Haha, your mystery diagnosis suggestion is my favorite.
I also need to do the really slow blink, that’s what always gets them to the answer on the show. I’ll have to practice next time I’m at a doctor’s office.
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Jen Reply:
May 13th, 2010 at 7:36 pm
make sure you cake on a lot of mascara too – i think that really helps. maybe that’s the miracle cure!!
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Jen stole my comment! So….ditto. Really.
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Katie Reply:
May 13th, 2010 at 7:33 pm
I believe you. Promise.
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I don’t comment often mainly because I’m really freaking lazy about clicking through on my Google Reader. Heh.
I have to admit, #7 made me laugh. Why yes, it IS all in your head. That’s typically where headaches occur. Duh.
My mom has chronic pain issues (scoliosis & sciatica). Her brothers are big health nuts who are all like, “Just do these exercises and you’ll be all better!” Um, no. It doesn’t work that way. She has a degenerative disease. And the implication that she’s failing to take care of herself doesn’t help her feel any better.
I’m really sorry for all that you’re going through. And now I’m going to shut up. Because sometimes that’s the best solution.
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Katie Reply:
May 13th, 2010 at 7:46 pm
I know, that’s the great irony of it all being in my head. I always want to be like, well, of course it is! But they wouldn’t ever understand how silly they’re being.
You definitely don’t need to shut up. I appreciate your comment and I’m sorry your mom has to deal with any of this. Truly.
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The only person that can tell me I look like crap is my sister…I said the same thing to her this evening. She told me she hated me….I told her I hated her more. Sibling love.
xoxomo
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Katie Reply:
May 13th, 2010 at 7:51 pm
Yea, I have a few friends who have the right. Because I know they know what’s going on. They get why I look the way I do and when they tell me I look crappy, they’re following it up with love and help.
My sister has become one of my best allies. It’s like we’re all of a sudden in upside down land. And I love it.
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I, like so many others, just don’t know what to say. I hope you know I’m thinking of you and wishing there was something, anything, to help you be in less pain.
I read (pretty much) every post. I struggle with commenting. But I promise never to tell you that you look like crap or shouldn’t be doing something if you have a headache. Because, um, that’s just wrong on so many levels.
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Katie Reply:
May 13th, 2010 at 8:34 pm
You certainly don’t have to comment, ever. Being here is more than enough, and for that, I am very, very thankful.
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I hear all of those on a regular basis but my all time favorite??? “it’s your own damn fault.”
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Katie Reply:
May 13th, 2010 at 8:57 pm
OH MY GOD, I totally forgot that one! People are just so incredibly special sometimes, aren’t they?
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Your list is right on! My mom is in pain all the time from terrible arthritis, and people say some of the stupidest things. I especially agree with #5. My mom tries, as much as possible, to go do normal things, even if she’s in pain. Sometimes she has to cancel because it’s too hard for her to go out, but she still goes and walks around Walt Disney World and goes to movies and does all those other things that everyone else does. She deserves to have fun, and so do you!
I read your blog, but don’t comment much (I’m not a big commenter!). I do want to say that I’m pulling for you, and every day I see a post from you I hope it says, “I’m miraculously feeling better!”
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Katie Reply:
May 13th, 2010 at 9:44 pm
Thanks Jen. I’m sorry your mom gets the same thing. It’s just tragic. People should be able to enjoy life as best as they can, without judgement.
I hope to write that post some day.
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Great post. I’m consistently impressed by how much you do despite your pain–I’m like, DAMN, I am a lazy bitch compared to Katie!
But, yeah, I have SOME chronic pain from spinal-and-other-bone issues, but I’ve been able to *greatly* decrease the lower back pain through exercise, and I am SO darn thankful for that!
As you know I have a greater idea about / “appreciation for” chronic pain due to my fiance’s stepmom having MS.
SO ridic that so many people say stupid shit to you. Like, REALLY?! You want me to just stay home all the time, instead of experiencing as much of the world as I can?! Eeeesh.
*HUGS* I have sorrow for your pain, and I totally respect you for living your life as fully as possible despite it. You are an inspiration. ♥
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Katie Reply:
May 13th, 2010 at 9:47 pm
Thanks. I saw your tweet earlier about your future MIL. I’m glad she’s doing a little better. I hope that things continue to improve for her.
And thank you for this comment. Really.
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My personal favorite for me is, “What…you STILL have cancer???” Um, yeah. I thought about getting rid of it for good, but I have so many doctors and nurses with kids who need to go to college. I just can’t let them down.
I am just THAT altruistic.
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Katie Reply:
May 13th, 2010 at 9:49 pm
Hahaha.
Best. response. ever.
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Well, I comment every now and then,but yours is the only blog I comment on. In fact, yours is the only blog I read!!
I have to ask though Katie, have you tried yoga?? It’s probably just stress…… ;p
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Katie Reply:
May 14th, 2010 at 9:59 am
Hahaha.
That was a good one. I was like, no, I haven’t…oh wait. Well played.
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i lurk here and on your twitter stream (please don’t go private!) and am always impressed by how you handle things, even on your bad days you’re awesome..i just never say anything because its awkward.. i don’t really “know” you but i read/stalk you.. o.O sorry.. lol
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Katie Reply:
May 14th, 2010 at 10:00 am
If I do go private, all you have to do is join twitter and request me. I may end up going private for a few weeks this summer for school related reasons, but I’ll give notice.
It’s never awkward to say anything. I’m always happy to hear from you.
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I can’t believe the nasty not so nice, horrible things that have been said to you. That’s my first reaction to reading that list. Love your blog posts and twitter and especially the photos of your cat.
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Katie Reply:
May 14th, 2010 at 10:04 am
Thanks. I think that probably some people mean well, but I think others just don’t get it. And I guess on the one hand, I hope they never really will. On the other, I’d kind of love for them to walk a day in my shoes and then tell me I look like crap.
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Hi-Have read your blog for a while. It takes a lot of courage to put all of this out there. Just hope you get some relief soon. You really deserve it! Good luck with school…you have done amazing things despite your pain. i am not sure i would be as strong as you. Best wishes!!
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Katie Reply:
May 14th, 2010 at 10:07 am
Thanks Jennifer! I think we’re all stronger than we think. I’m sure you’d surprise yourself, I just hope you never have to find out!
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Thanks for nailing this on the head. I couldn’t have said it better.
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Katie Reply:
May 14th, 2010 at 10:08 am
You’re welcome! And thanks for commenting. I’m going to go spend some time on your site later today/this weekend. Looks right up my alley!
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My sil is not speaking to me because my recent surgery was an ‘excuse’ not to visit and to make Easter all about me… Because having the equivalent to a c-section (with no baby wah) is such fun and games that I choose it (well I did, but there was growth on my abdominal wall that my dr thought maybe she should take a look at) just to f*ck with her…
However, your post makes me think, makes me laugh, and makes me cry. I think you are gorgeous! And I (along with so many others) am in your corner cheering you on!
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Katie Reply:
May 14th, 2010 at 10:10 am
Are you serious!? That’s ridiculous. But in-laws are like that. Mine believe that having surgery was, and I quote, “the worst decision of all time.”
I hope that you’re recovering well and know that I’m in your corner too.
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Is it possible that you don’t have enough spinal fluid because it’s all in your freakishly large feet? Just a thought
I don’t remember how I found you but when I did I went back to read every post you’ve written. I never know what to say to people who are in pain, physical or emotion, so I tend to try and just get a smile. I try to find the silver lining and think that maybe in the grand scheme you will be a better person because of what you’ve gone through.
Look at the number of commenters that have said you inspire them and who say they understand now what a family member or friend may be going through. You haven’t even graduated yet and you’re already changing the world! You are a good woman, Katie.
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Katie Reply:
May 14th, 2010 at 10:12 am
Haha. The feet thing made me laugh. I hope I don’t have CSF down there.
Humor is always good, and knowing that I might have helped others along the way makes a lot of this worth it.
Thanks. xoxo
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I love how people think that because you don’t have a broken arm or a leg bone protruding from your left elbow that you aren’t in pain. It’s like really dude? Since when did you get to judge this? Are you inside my body? Um nooooo.
I once threw my back out, couldn’t move for a week. Accidentally gave myself second degree burns with a heating pad. (it’s rather mortifying to have your father bandage your burnt butt at 17) I called my cheerleading coach to tell her and she said “well, you sound fine” (No duh I sound fine. I hurt my back. not my vocal cords)
Oh and when I did steroid epidurals it totally backfired and my body metabolized it like a real steroid so I had steroid face and acne and I gained about 20 lbs in 6 weeks. I ran into a friend and she said “Wow, you’re right. you really DID gain weight”
Pretty sure she’s related to/friends with your friend who told you that you looked like crap. Charmers aren’t they?
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Katie Reply:
May 14th, 2010 at 10:14 am
Dude, that was not your week was it? Thrown out back and then burns from the heating pad? Ouch. That sounds precisely like something I would do.
And yea, your friend is surely related to some of my classmates. I just wonder how it got so incredibly difficult to think before you speak. You know?
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I don’t comment very often because I typically just text or shoot you an email…but I’m always here for you, believing every word.
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Katie Reply:
May 14th, 2010 at 10:14 am
I know. And I read yours and never comment either. I think we’re square. xoxo
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I won’t even get into some of the comments I get about type 2 diabetes, some of them are along the same vein, though.
I try to at least tweet, even if I don’t know what to say to some of your posts.
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Katie Reply:
May 14th, 2010 at 10:15 am
And that is more than enough. You’re never required to respond. I just wanted to give some levity and maybe a little help to those who’ve been struggling with what to say. Though I’m not sure I helped much. Eh, such is life.
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i read and don’t comment as much as i should. quite honestly, i find you entirely inspiring and strong. when i read your words on good days and difficult days, i’m amazed. and sometimes it’s just hard for me to find a way to say thanks in your comments. so thanks for calling me out, because i do need to comment here more, and remind you just how awesome i think you are.
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Katie Reply:
May 14th, 2010 at 10:23 am
Never feel like you have to comment, I’m the first to admit that I’m crappy about it too. I wish I wasn’t.
I think you’re awesome too Nic. Really. You’re stronger than I’ll probably ever be.
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Still can’t think of a comment that doesn’t sound trite or hokey. But, if I may, you are one of the strongest, most determined people I know. Er, read about.
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Katie Reply:
May 14th, 2010 at 10:37 am
At first I thought you said that you were trying to right a comment that didn’t sound hockey. And I was like, whoa, how do you make yourself sound hockey? And then I realized that I can’t read.
And thanks.
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I’m one of those people who reads and doesn’t always comment. But I think of you, every day, and have hope that you’ll find answers. And – I’ve said it before – that I think you are incredibly brave. Not only for going through what you go through each day, but for being able to share it.
I’m so sorry that people say those kinds of things. How maddening.
Sending you positive energy and prayers for a resolution.
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Katie Reply:
May 14th, 2010 at 10:38 am
It’s okay that you don’t always comment and I hope that this post didn’t come across implying otherwise. Really. I am the worst at commenting.
I really appreciate you stopping by though. Us doctor’s wives have to stick together.
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Life of a Doctor's Wife Reply:
May 15th, 2010 at 11:06 am
I totally didn’t feel like you were trying to guilt trip people into commenting… But it did seem like a good chance to “explain” things. A non-judgey invitation.
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OH EM GEE!
I loved this entry. I am going to link to it and be sure that more people read it. You totally get it. I am going to see about putting it up at WEGO Health as well because I truly believe that people need to be aware of these awful things people are saying to those with chronic pain!
1. “You look like crap today,” gets a “brown? lumpy? or is it the runny crap variety?” I take it literally and they realize that they are being ridiculous with it. Sometimes they’re confused and I have to explain it but people are stupid.
2. I *hate* hearing “it can’t hurt that much,” and everyone around them IS in pain. Kick ‘em in the shins.
3. “Have you heard about so & so” also pisses me off. I am a personal-expert in my own pain condition. YES, I have heard about that. YES, I have tried it. NOPE, it didn’t work for me. NOPE, I have no interest in continuing to try it. Thank you very much, asshole.
4. More sleep? Hahahahaahaha – because you know, it’s really easy to sleep while you’re in such severe pain, huh? *kicks someone else for you*
5. I do x, y, and z while I’m in pain because I either have to or because I want to. I am allowed to have a life even if it involves being in pain. GRAR!
6. If I don’t think about it, I’d have to think about how I’ll maim you. Would you rather I think about it again now?
7. All in my head? No, it’s all in my back, actually. Thanks for the suggestion. *eyeroll*
Can you tell this is an emotional subject for me, too?
8. That’s great to hear. Now go pull your head out of your bunghole and wash your face, you stink.
9. Well, right now I don’t have any health insurance and so I *can’t* go to the doctor. I can’t see my Chinese acupuncturist, I can’t have regular cranial-sacral therapy. I can’t be treated with pain medications stronger than Aleve. Guess what? The pain is still there.
10. “It’s always something with you, isn’t it?” makes me stabby. SERIOUSLY STABBY. Oh my god. I want to punch someone when they say this to me. I am irritated even just thinking about that right now. Yup, it’s always something with me, I don’t want to feel normal, I don’t want to be pain-free, I don’t want to live a totally “normal” life. Nope, I’m choosing to have something “always” wrong with me. Ass.
Sorry I vented so much, this entry really struck a nerve with me. I am going to start talking about it now. *mmmhmmm*
<3
PS – you look good today.
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Katie Reply:
May 14th, 2010 at 10:41 pm
You can vent all you need. I’m really glad that it’s something that resonates beyond the borders of this site. It’s always a nice bonus to help others.
I’m sure you look lovely today as well.
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Granted, I only “see” you in one dimension, but I always look at your twitpics and think, gee, she’s so pretty, I’d never guess she was in so much pain. And, I wish I could figure out how to be laying down and take a photo of myself with my laptop. Also, I really always love your glasses. Also, the frequent haircut/hair pretty photos help too. From Florida, you’re a smokin’ hottie, you and your sweet kitty. I really hope I’m not one of the internet people that harps and preaches about stuff you should do, or what about this, or that, and I am so sorry if I’ve ever come across that way, geeze oh man. As I said the other day, TEAM KATIE! Two years, NO BIG DEAL! And I know that I am always reading, always tearing up in the mornings at my desk at work, at both you and Heather, and I don’t “say shit with a mouthful” as my father would say. What I find impressive and uplifting is your humor and sarcasm. It is so pervasive in everything you write! I love when you say “you’re doing it wrong”, it makes me giggle every time!
You rock, dude.
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Katie Reply:
May 14th, 2010 at 10:42 pm
You don’t harp or preach, I promise. I appreciate your support tremendously.
And the fact that you think my couch/cat pictures are pretty is hilarious. And sweet. Mostly hilarious.
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I often don’t comment on blogs (not just yours) because I don’t feel like I have anything meaningful to add. There’s no shame in that.
As for all the stupid shit people say, it’s because people are stupid, cruel, thoughtless, or a combination of the three.
About #7, I thought your pain WAS all in your head? Like, literally? So what’s wrong with saying THAT?
OK, that was a dumb joke. Trying to lighten the mood. Ba dum bum.
And finally, when I saw you a couple weeks ago, you looked great. So great, in fact, that I did have a fleeting thought that maybe you were feeling OK that day. Which would be awesome, if you were. And if you weren’t, then you really are a rock star.
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Katie Reply:
May 14th, 2010 at 10:43 pm
I agree, there’s no shame in not commenting. And I totally didn’t mean to imply otherwise. I probably should’ve proofread this post a little better before hitting publish. Live and learn.
I’m generally really good at putting on a happy face. But that morning, I felt pretty good. If you’d seen me that night, you wouldn’t have been impressed, trust me.
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Thank you! I posted this to my friends on Facebook, because many tell me these things and it irks me!
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Katie Reply:
May 14th, 2010 at 10:44 pm
I’m glad it was helpful for you! Yay!
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I’m in the “I read but don’t always comment because ‘I’m sorry’ just seems lame after a while” camp. I always feel for you and hope like hell that you get some relief each and every day.
But part of the lack of consistent response from me, here and on Twitter, is because I am simply overwhelmed with dealing with my mom’s constant pain. I already feel completely inadequate and useless in helping her cope day in and day out and, to be honest, sometimes I’ve just got nothing left or I’ll lose it.
My intent here isn’t to make this about me. I just want to offer some thoughts from another side of the issue. Sometimes, we feel as helpless to your pain as you do, then add on the guilt because we know that doesn’t lessen your pain One. Fucking. Bit.
People, in general, are ignorant, insensitive dolts when it comes to dealing with other people’s medical issues. I think a lot of it is fear. A lot of it is thoughtlessness disguised as “suggestions.” Much of it is because people really don’t know what to say, but can’t appreciate the wisdom of “silence is golden” once in a while because they have to say SOMETHING, right?
I hope through the comments here that there is a lot of silent support, even if it’s not evident. And a lot of people who’d be behind you if you did smack the crap out of someone who said any of the stupid things you listed!
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Katie Reply:
May 14th, 2010 at 10:46 pm
I never really meant to make this a guilt trip about posting and I feel like a right ass for doing so. I just have been getting a number of emails lately from people who want to comment but don’t know how. You never ever need to feel compelled to write anything, please know that.
I’m really sorry that you’re struggling so much with your mom’s pain. I have such admiration for those who help care for others. It’s incredibly tough on you and I am really aware of that, just from seeing people in my life deal with it.
Silence is golden sometimes.
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Sue G Reply:
May 15th, 2010 at 1:16 pm
Maura:
Reading your comment here made me remember when I was much younger, in my 20′s, and, although married, I moved back in with my mom to help her during her battle with cancer. It was a 24/7 responsibility. And to this day, I remember all the phone calls from people asking how she was, if there was anything she needed. That was nice. But I would have killed for one person to ask how I was, if there was anything I needed–like someone to sit with her for one hour so I could run out and breathe, scream, shop, whatever. No one did. And now that I am in my own battle with cancer, I try to be very aware that while others think I am the one going through this, I am not alone in my journey and those people who love me also need to be acknowledged and supported.
I don’t know where you live, but if I lived close by, I would offer to come over to sit with your mom so you could get out. Just so you could.
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I’ve followed your blog for quite a while but am not even sure if I’ve ever commented. I’m sorry about that – I never know what to say. I am so sorry that you have to deal with so much pain in your life. I admire that you keep trying… going to school, going on vacations, trying to live your life as normally as possible. I’m afraid I would just give up on trying to do things. So, feel good about yourself for the things you are able to accomplish – in spite of the pain you deal with. I pray that you will find relief for your pain.
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Katie Reply:
May 14th, 2010 at 10:46 pm
Thanks Lisa. For reading and for the prayers. Never feel like you have to write anything, just thank you for being here.
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Sorry your friend was so crappy. That’s a really awful thing to say, even if you were completely healthy and just having a bad day. And it’s also really crappy people would judge you for LIVING YOUR LIFE. My husband has had some symptoms from post-concussive syndrome for the last month that were more “seriously annoying” than “serious,” but they had him not wanting to do regular things, like attend a friend’s wedding, or go on a date. I finally had to look him in the eye and say, “My mom (who has MS and can’t walk) is constantly in pain. She constantly has muscle spasms. She can hardly sleep. Sometimes she can hardly form words. But she gets out and does as much as she can, because otherwise, what is the point in living? So get up, and let’s go to the movies!” I think it’s very difficult for someone who has always had their health and never watched someone very close struggle to imagine not curling up in a ball and giving up, but that doesn’t make it right to say, “You went on vacation? I thought you had a headache?”
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Katie Reply:
May 14th, 2010 at 10:49 pm
YOU are one tough lady. Dealing with a sick husband (dude, one day with mine sick and I’m ready to kill both of us) and watching your mother deal with MS is a lot. I am truly impressed with your strength. Really.
I think we both need to go to a movie.
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Oh, my. The tactless souls just never stop, do they?
I wish we could just wave a wand (I have one now, you know) and make this go away. Since we can’t I refer you back to the power of the Katie.
Little Katie is working on her sensory issues and teething. She sends hugs and gentle pats (her two best things).
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Katie Reply:
May 14th, 2010 at 10:49 pm
Oh Little Katie. She’s a major source of inspiration. I’m sure she has her days like I do, but I strive to be as strong as that little girl.
Hugs are the best.
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I don’t comment often, but just know that I think you are very strong and brave. I can’t even imagine the pain you have been in for the last 9+ months.
The stupidity of people still surprises me sometimes. Some of the things you listed just shows how stupid people can really be. Next time just punch them in the neck. Seriously.
Hugs to you.
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Katie Reply:
May 14th, 2010 at 10:50 pm
I think the stupidity of people should always be surprising. It’ll be a sad day when we expect people to be jerks. You know?
I will consider the neck punch method.
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I read too but I usually don’t comment because most other people have already said what I would say. Or I couldn’t think of what to say. Maybe I could just say “Hi, hope you feel better today!”
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Katie Reply:
May 14th, 2010 at 10:50 pm
I would love that. But never, ever, feel like you have to. Okay?
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I don’t comment often either, but I come here because I care. And, you are beautiful.
I suffer from depression and anxiety. I love being told to “just get over it.” Yeah, cuz that’s how it works. sigh…
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Katie Reply:
May 14th, 2010 at 10:53 pm
Ugh. Don’t you wish it was so easy to just get over it? I’ve struggled with anxiety for so long, and my sister is a new sufferer, and I wish it was so easy. I’d give anything to know life without pain and anxiety.
It’s just so sad that other people can’t even try to understand what people go through.
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Sorry to comment again but I was reminded of a phrase you use…
Victim: you’re doing it wrong!
I think (some) people expect you to wallow and collapse and the fact that you are not, that you are living your life, means (to them) that it must not be serious. This is because they don’t have your strength and cannot conceive of doing/achieving all the things you do while in such serious pain (as well as all the other fun twinges you get)
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Katie Reply:
May 14th, 2010 at 10:54 pm
I like that explanation. I think from now on I’ll try to think of it that way.
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Hi Katie,
I read here, but don’t comment that much. I have RA and constantly in pain. My favorite is: “You are too young to have RA.” I’m 29 and yes it’s possible for you to have it. My second favorite one is, my mom has that, and she drinks special drinks.. I let them know that OA is a whole different disease.
Good luck with school.. I’ll be going back in the fall to get my MSW.
Jennifer
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Katie Reply:
May 14th, 2010 at 10:56 pm
Ugh. People who assume that whatever’s wrong is easier than you’re making it seem are my favorite (not). RA and OA are just *so* not the same thing. I wish it was easier to change people’s minds.
Good luck in school, that’s a great career you’re going towards!
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Great list. Just one tiny comment – you might not want to speak for all people with chronic pain, though I’m sure you just meant it as a list of things you personally are tired of hearing. I also have chronic pain, though its probably not as dibilitating as yours. I read your blog because I’m inspired knowing you continue to persevere and live your life. No, it won’t make my pain go away, but its a huge motivator – Katie’s taking a million finals this week, the least you can do is fold last week’s laundry…
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Katie Reply:
May 15th, 2010 at 9:23 am
I think you make a good point about speaking for a wider audience. Though I am genuinely curious- are there any on here that you disagree with? I’m not asking because I think I’m right (that’s rarely the case), I’m just curious about your perspective on what’s on the list and how it applies to you. Thanks for the suggestion.
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B Reply:
May 15th, 2010 at 12:04 pm
Just #3, in a round-about way. While it can be annoying to be told that people have it worse than you, I do tell it to myself as a reminder to keep things in perspective and to motivate myself.
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Katie Reply:
May 15th, 2010 at 8:27 pm
Gotcha! That makes perfect sense. Like I said perspective is definitely a great thing. I just don’t like being told to get it. Know what I mean? It makes it seem like I don’t have any, which just isn’t the case. Thanks for your input!
Katie,
I’m not sure if I’ve ever posted, but I have read your blog for a very long time (back to CB days). This topic really resonated with me as I have heard many of these same comments. Last year I had aseptic meningitis a few times and had to have three spinal taps. Each time I had the most horrific headache for 2 weeks (I couldn’t have blood patches as I was too high-risk). I am so sorry you’ve been dealing with this type of headache for so long. It’s awful, but know that I am praying for you and hoping that you will find relief. Congrats on being halfway done with grad school.
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Katie Reply:
May 15th, 2010 at 9:26 am
I remember you Jennifer! Aseptic meningitis? Ugh. I’m so sorry. I’m sorry you had to experience the spinal headaches, especially without being able to get the only real treatment for it. That is just insanely unfair. I’ll be keeping you in my thoughts too and I’ll try to stop by your site for a visit soon.
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You’re really pretty and you make delicious mauve cake. xoxo
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Katie Reply:
May 16th, 2010 at 9:11 am
Hahahaha. Oh the mauve cake. Someday I’ll make you a proper red one.
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I love your list of things “NOT TO SAY”. Anyone that struggles just to get through each day, sometimes just getting through each freaking minute is difficult. My freaking boss needs to be educated about the things NOT to say to people living with chronic pain. The sad thing is she is a NURSE!!!!
Hang in there Katie, I am sharing your pain.
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Katie Reply:
May 16th, 2010 at 9:13 am
She’s a nurse! Oh man. It seems like so much of the times the people who should be the most understanding about stuff like this, are in fact, the least.
Oh irony.
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This is embarrassing to admit, but I love you and your wit!I found your blog last week, it was a link on ChronicBabe’s Goodie Bag. Now, I appreciate Jennie, and all she does to support us “sick chicks”, but I need some acerbic wit to get me through the day sometimes.That’s where you come in! **Happy dance here***I cannot thank you enough for your perspective, and your willingness to be open and share in on this blog. LOVE your wit, your candor, your unvarnished truth.I’ve spent almost 20 years feeling like a freak, hiding my issues, and feeling so desperate and isolated. I am a professional working in healthcare who has managed to keep working through an arms-length list of health issues that just seems to keep growing- wondering at times if I was going to lose my mind just trying to hold on. Also wondering if everyone else had it better off and if this was really what some doctors try to convince me it is- something in my head, some kind of glitch I have chosen.There are times I just want to kick people in the junk for being so ignorant and insensitive. But ah, that would just bring on it’s own repercussions… %*&$!. However, it would be my first offense, and I may just get off lightly….totally worth it.I digress.You are not alone, I am not alone, and we can and should find comfort in each other’s trials and victories, no matter how small.Thank you, thank you, thank you. I think of you often, and hope this small measure of comfort helps in any way it can. Don’t lose heart, blog it out.
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Katie Reply:
May 16th, 2010 at 10:22 am
It sounds like we have a lot in common! Though trust me, Jenni has her some acerbic wit too.
It’s hard to be ill, and it’s more isolating than anyone realizes. I’m so glad you’ve found your way here. Some day you’ll have to tell me how it is working in the healthcare field when dealing with health issues. I’m working my way there, but I am fearful. I think I’ve found a sub-specialty that will accommodate most of the things I struggle with, but I still have 2 years of school to figure that out.
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jazzhound Reply:
May 16th, 2010 at 5:02 pm
Great stuff.
I started working in healthcare so I could understand the system from the “inside out”. Sometimes it feels like it was better not knowing, but other times it helps to know the ins and outs.
We could probably swap some wicked stories.
My favourite one lately is the neurologist who told me that I should just start running marathons and my chronic pain, fatigue, and arrhythmia were minor- that somebody my age should be in much better shape. Coulda’ clocked him, instead called him an insensitive SOB. Nice. I’m so very dignified. Screw that.
So much for the 7+ years of university education. Push me and I get all ghetto on your ass.
The upside of working in healthcare is that you get an opportunity to “educate” your insensitive colleagues. The downside is that you even have to.
I’ll keep in touch, and will continue to uplift you as you continue on your journey to reach your goal.
Did I say “thank you” lately?
You rock.
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I think you look great today.
I rarely comment either, but I read, and I wait for that day you find that final answer. I really hope that day comes.
I love the way you make me laugh even when you’re describing something awful or scary or both.
Did I mention that you look great today?
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Katie Reply:
May 16th, 2010 at 9:21 pm
Why yes, you did. Sometimes I have to make it funny, otherwise we’d all (at least in my head) be crying. And I can only handle that once or twice a week.
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Have I already (or has someone else already) pointed you to the Spoon Theory? Everyone who has, or in any way deals with someone who has, a chronic illness should have to read this.
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Katie Reply:
May 17th, 2010 at 7:41 pm
I’ve read it! It doesn’t work for me as well as it does for some others. I love the idea, but my energy varies from hour to hour. Somedays my spoons magically replenish, others, they disappear.
Great great suggestion!
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