Minding my manners

A few weeks ago, I found myself in the ER one morning after 24 hours with a fever-and-friends (tachycardia, chills, shakes, aches, and a horrid headache). I was pretty certain it was just something viral, but a possible central line infection is not something you mess around with.

Unlike last fall when I was admitted right away and loaded with IV antibiotics only to be discharged 10 days later with a question mark diagnosis, the ER doctor I saw this time was pretty chill. Blood culture results take a few days to come back, but based on my other labs that morning, he agreed that it was probably just viral and he let me go home. Just 24 hours later my labs were a mess and he wouldn’t have let me leave, but at the time it was the right call.

I was appreciative and I thanked him, but I also apologized. I felt bad for raising alarm bells prematurely, for using the ER unnecessarily, and for wasting hospital resources. I felt bad that my mom had to go out of her way to drop me off before work and I felt bad that my aunt had to come drive me home. All this hassle and there wasn’t even anything wrong with me. Everyone assured me that coming in was the right thing to do, better safe than sorry and all that, but self-doubt triumphed to the point that when I got home I actually pulled out my TPN manual and read the pages about what to do if you are showing signs of infection to reassure myself that going to the ER had been the right move.

It had. But still. I felt silly. I felt like a hypochondriac. How could I not know what a virus felt like? Alright, I thought, now that I know what a viral fever-and-friends feels like, next time this happens I can wait it out two or three days before being concerned.

IMG_5784

Okay, so not a virus

And then the next day the hospital called. My blood cultures were growing yeast. I had to come back in to start treatment. I was probably going to lose my line.

There I was feeling bad about using the ER unnecessarily and apologizing for being worried over nothing when in fact there was actually something to worry about. There I was preparing myself to wait it out several days next time when in fact going in early is what allowed them to catch it early and start treatment before things got worse.

I was apologizing for nothing. Well, actually, I was apologizing for reacting appropriately to my situation, a situation beyond my control…so yeah, I was apologizing for nothing.

And the thing is, I do it all the time.

I say sorry. A lot. Too much, honestly, and most of the time it’s for things that are out of my hands.

By nature and by nurture I am a polite, peace-keeping people-pleaser. Let’s be clear here, I am nowhere near perfect, but I genuinely never want to be a bother. I never want to be an inconvenience, a burden, or an extra stress in someone’s life. And yet, I live with an unpredictable chronic illness that requires me to be a bother and to rely on other people to carry the extra load that my broken body can’t bear.

I hate that part. In fact, that might even be the part of this whole deal that I hate the most. I have this unrealistic idea that my struggles should be confined to my own life and that they shouldn’t affect anyone else. Sometimes I even feel bad even asking my doctors for help despite the fact that helping me is what they get paid for.

And so I say sorry. A lot. But they’re not empty apologies; if I say sorry it’s because I mean it. It’s because I respect your time and I don’t want to waste it. It’s because I know you have enough going on without having to worry about me, too. It’s because I wish you could be carefree even though I can’t. Even when I know it’s not my fault, I still genuinely feel bad when my problem ends up becoming someone else’s problem, too.

Very often I feel like a burden, but the thing is, the only person making me feel that way is me. And I think maybe the reason I feel like a burden all the time is because I’m constantly apologizing for being one. People tell me the same thing over and over again, “don’t be sorry,” and so I think it’s about time that I listen. I think it’s about time that I stop apologizing and start saying what I really mean.

And what I really mean is thank you.

When I apologize for needing a ride to the emergency room, what I really mean is thank you for going out of your way to help me. When I apologize for having to cancel or alter plans because I’m too tired or too sick to follow through, what I really mean is thank you for understanding. And when I apologize to a doctor for presenting with a problem they don’t know how to fix, what I really mean is thank you for listening and validating my concerns anyway.

What I really mean is thank you.

Thank you for your patience. Thank you for your time. Thank you for looking out for me and making sure I’m not left behind. Thank you for caring.

IMG_5838

Thank you for making me important to you because you are important to me, too.

I’m an imperfect human in an imperfect body. As much as I would like to be able to handle everything on my own, I can’t, and that’s not something to be sorry for. At the same time, there are so many people in my life who help me carry that load, and that is something to be grateful for.

So I’m going to stop apologizing for my existence, and start thanking other people for theirs. I’m going to stop simply minding my manners and start being mindful of how I mind them.

Less apologizing. More appreciating.

Mind how you mind your manners.

I don’t really know who Miss Manners is, but I’m pretty sure she would approve.

27 thoughts on “Minding my manners

  1. Dear Cathrine,
    Thank you so much for this post! I deal with chronic illness everyday also…I find myself saying “I’m sorry” alot everyday, my whole family helps take care of me. I was always athletic and a mover, now days I can’t make plans for anything! So from my husband and my sisters and mom and dad it’s always I’m sorry! I do try to remember to say thank you but I am afraid if they don’t know that I don’t want to be this way or that way they won’t know I didn’t want to be a bother, Thank you is so much nicer! So Thank you for teaching me!

  2. I just found your page after reading an except from this post on Tracy’s blog “A Spoonie’s Tale;” and I’ve got to say, I’m so glad that I did!

    I connected with this post so much. Being a spoonie myself, I also feel this way a lot. If I didn’t hate doctors and all things medical as much as I do, I’d probably go to the ER way more often and apologize for it too!

    And this sentence, “I have this unrealistic idea that my struggles should be confined to my own life and that they shouldn’t affect anyone else.” I struggle with this so much!

    • Hey Ivy – you are definitely not alone! It is such a struggle, indeed. I love that there are other people who understand where I’m coming from, but I also hate that there are so many of us in that position. Sending some extra spoons your way!

  3. I came here to find a place to thank you for your “Good Job” essay and photo that I read elsewhere. My eye just leaked a little bit after reading that, then I found this essay. Again, I say thank you! Thank you for putting yourself out there. For writing about things so many of us deal with. The details may be different, but often the humanity of our situations is similar, if not exactly the same. Your efforts to reach out to others are working and I just wanted to let you know that and say thanks. So-Thank you very much! I appreciate you and your efforts! I hope to read more ok that you’ve written when I’m up to it 😉 Have an awesome day!

    • “The details may be different but the humanity of our situation is the same.”
      Love that! I’m so glad you connected to what I was saying and thank you for this comment! Haha I’m still in bed and working on getting up and this was a lovely little boost 🙂

  4. Heya I love this post! I have a condition where my pudendal nerve is inflamed and other nerves in my pelvis are playing up and I get really bad tail bone pain to so I can’t lift things or travel long and I spend a lot of days in bed, I also have a disability called dyspraxia. Yesterday I was in a mess becouse for weeks I’ve had a really awful pain flare and I haven’t been able to do anything so my husband and parents have had to do all the running around for me becouse I’m not able. To make things worse my pain specialist doesn’t know what to do for me anymore and doesn’t know what other options are there for me which is hard because I want to get better for my family. I went into a depression becouse I felt trapped and like burden becouse I don’t want to be this person, I want to be the one helping everyone, not the one who everyone has to rally around for and I got scared, what if I get worse?!?! What if my husband regrets marrying me which made me freek out even more lol. So by the time my husband got home from work I was in a right mess! And he made me sit down and said to me I chose to marry you, you didn’t Forse me to, I new what I was getting into, and I will never ever regret marrying you, not in 3 months time, 6 months time or 10 years time. You have a big family who loves you very much and will always be there to help, we help becouse we love you and we WANT to help you. I never thought about it that way that people will want to help me? From now on its extremely hard but I’m going to try and not say sorry about this and that when people help me but I’m going to try and say thank you and show them it means a lot to me instead.
    I’ve found a new specialist in London which has given me a lot of hope but at the same time will mean people taking me to London and back which I feel bad for but I will some how find a way to repay the for all that they have done for me.
    Thanks for this lovely post, I came across it at a really good time! 🙂
    Lots of love katheryn

  5. Hi Catherine,
    I just found your blog and so far I really love it! I can relate a lot to you when I was 4 I was diagnosed with gastroparesis and a generalized dysmotility disorder. I am 22 now and luckily both of those conditions have gotten a lot better but now I have other chronic illnesses. I have specific antibody deficiency, b12 deficiency, migraines, migraine associated vertigo, asthma, and GERD. None of my doctors have tried to figure out if they are all linked but I suspect the malnutrition from from my gi issues have something to do with it. I hope you are doing better. I really related to this blog because I do the exact same thing. I just don’t want to be a burden on people. I hope you are doing better!

  6. Thank you so much for this post. I have realised that I have fallen into the same trap. I too mean thank you when I say sorry… all the time. I also realise now that maybe I’m also belittling those who love me by saying sorry. Thank you as so much better. Thank you for loving me enough to care and be here for me. When its the other way around I have always been there for them as well. My parents are also both with their problems and we all muddle through together… as a loving family. And yes, I am very grateful for that. Thank you for making me see it with more clarity.
    Cath xx

  7. I’m the same! everytime I’ve needed to go to ER I felt so guilty, so awful and sometimes would even prolong it to just if I could hold out. But what your first commenter said is true – I’ve never been told off by doctors or nurses, instead they are generally glad to help me fee better.

  8. Catherin
    I work in the hospital and believe me you should never feel that you need to feel bad about using the emergency. You have to be careful because things could escalate quickly. The emergency staff would rather deal with you then half the other people who come in with the most silly things. Lise

    • Haha thanks Lise – it’s terribly judgmental, I know, but I have definitely sat in the ER listening to people checking in and chatting and thinking “this really isn’t an emergency”…but then I was watching that show Life and Death at VGH and in response to a small knee scrape that didn’t even need a band-aid one of the nurses said that everyone’s definition of an emergency was different and that they had to keep that in mind. So now I try to keep that in mind, too.

  9. I don’t know how many times I’ve had that debate in my head “do I go up (to the hospital) or do I wait it out?” “Do we ring the ambos or wait and see if this will pass?” My main problem is that I hate going to the hospital and that is a barrier to my seeking help when my head knows I should go but my heart doesn’t want to. I have had that feeling you’ve described as feeilng like a fuss has been made over nothing. Invariably, the paramedics and drs are wonderfully reassuring “That’s what we’re here for”, “You’ve done the right thing in calling us” even when I feel like a fraude when there is a false alarm. More often than not, the paramedics can do the tests they need to do at home and then decide the next move. Even on a false alarm, they still reassure that I did the right thing in calling them because some conditions are too tricky or dangerous to play guessing games. My main doctor echoes the same sentiments. I need to convince myself that one never knows if a symptom is related to something trivial or more sinister so, by taking the careful option and getting checked even if I think it might be nothing, I’m being responsible for my health (and responsible for those around me too). As you said, if you don’t take swift action, the delay in treatment can make a significant difference to the outcome. I hope you are feeling better each day and have a good outcome.

  10. Dear Catherine,
    I look at that photo of you and Holly and I remember so well, those two little girls in my kindergarten class who had such a wonderful close bond, even at such a young age. Your special hugs, love and laughter made teaching you a joy! You both had (and always will have) a special place in my heart! You two were inseparable then, and I can see that you still are! I am so very happy for you both. Friendships like that are few and far between. It is a hard thing to realize, but those who love you gain as much by being there for you, as you gain from them. You are a gift to Holly as much as she is to you!
    Thank you for your beautiful insights…you are so gifted at expressing what is so hard to put into words!
    With love and prayers, always! Diana Ungemach

    • Mrs. Ungemach we reminisce on kindergarten a lot! We use the “she would get the pencil boxes and I would save the seats, or vice versa” story as proof of our friendship haha. I know that the kind of friendship we share is not one that everyone is lucky enough to experience and I’m so grateful for it every day!

  11. Hahaha love the last line! Yup I would also think Miss Manners would love to be minded properly (imagines a prim-and-proper headmistress-like figure with hair bunned into a net, wiggling her fingers to remind us to mind Miss Manners properly .. whoever that is.)

    I do that HEAPS too (ugh I hate myself for it and my friends are just like ‘why do you keep apologizing for yourself ??’ Sometimes my answer is as lame as ‘I don’t know what YET but there’s bound to be something …’ yeah, I know.)

    “Sorry you’re stuck with me instead of like, being with Real friends” = “I’m a mess, I know, & thank you for braving my crap every time” (my friends who know enough & who I’m comfy enough with, be like ‘.. so we are not your friends!?!” #stoppitkids #playnice #thatsmean lol)

    “Sorry you’ve to sit with me AGAIN ..” = “so I didn’t actually want to come for this but the assurance that you’d be my safezone person kind of helps – I know I should expand that zone, but for today and now, I needed this, so thank you”

    “Sorry for the weird question but …” = “I’m too insecure to ask this question because this feels like a trivial question no one else thinks about, but thank you for validating my need to be assured of things, cos I can’t deal with unpredictability” (What my friend replied was, “no weird questions, good to clarify stuff!”)

    😌☺

    I’m guessing this means you’re home now? Also, am on Mighty Voices now, yay :p My intro post on it (if you haven’t seen it, I posted one) was actually a shout-out to you (& Michelle, Julianna Snow’s mom) btw, haha 😉

  12. Thank YOU, Catherine, for teaching me a valuable lesson about gratitude this morning. This makes me think of a homily I heard yesterday, in the prison chapel. Father Dennis encouraged us to look at the story of the Good Samaritan from the perspective of the one the Samaritan was helping, and suggesting that it’s good to let ourselves be the one being helped…..Thanks for connecting these two ideas in my heart today.

    • I love that idea – looking at the story of the Good Samaritan from the point of view of the one needing help. It really ties in well to the disability experience, too, since the story is usually focused on the able bodied people and their interactions with the disabled as opposed to the experience of the disabled. Excellent point!

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