Hi all, hope you're having a pleasant day and doing well!
I recently completed a very large cross-country move, and the last couple months I have felt fairly overwhelmed and fatigued. I have been using all the strategies I know to manage my fatigue and limited energy levels ( physical, mental and emotional). It's been a grueling process in many ways. Today I finally felt up to reading a card a friend had given to me for my birthday about 2 months ago.
I could see how it may seem silly to some that I would wait so long to read a simple card, but as I went to read it initially my friend assured me it was ok to read later, and with everything going on that was high priority, combined with trying to conserve my neurological resources during the move, and actually forgetting about it - I finally got to it today.
Most of the card was very uplifting but a small passage really got under my skin and is really causing me intense distress. A phrase saying " I know you're not called to be passive" followed by instructions on how I should be living my life. I think this friend thinks she's encouraging me, but for someone who slept until almost 11am this morning out of fatigue from a simple walk in my new neighborhood yesterday, I feel like bawling.
The card is having a paradoxical affect and I feel incredibly discouraged and angry even.
I want to scream at this friend "I AM NOT PASSIVE!!!!! THROUGH MY FIGHT TO BE DIAGNOSED AND REFUSE TO BE SHAMED I SAVED MY OWN LIFE GETTING DIAGNOSED. F*%$ YOU."
Thanks so much for letting me crack the lid on my pain and frustration.
Written by
Cobalt1312
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Gahhh I am so sorry!!! Some people say the darnest things. Nobody on this list, least of all you, is passive! We have all overcome insurmountable challenges to regain our health 💪💪
Is she religious? I googled "not called to be passive" not really understanding what it meant (despite english being my native language!) and it seems to be a reference to a bible passage. I guess she was trying to help but lemme tell ya, the way some of these people try to "help" has quite the opposite effect 🙅♀️
RANT AWAY and then try to let it wash over you like a duck's back 🦆 we're here for you 🤗🤗🤗
Thank you for your kind words jade_s!! 🥰🤗🤗 They are so appreciated!!!
Yea, it's interesting how people can really 'step in it' when they're trying to helpful. You are very perceptive, this friend is incredibly religious. I'm not down on religion, as I am religious myself, but this friend in particular seems to have a way of coming across like she's judging me on a fairly regular basis. She is a bit awkward socially to boot, and I think your guess that she's referring to a Bible verse without directly calling it out is most likely correct.
She has also emailed me in the past to say "I'm concerned about you" which riled me up quite a bit at the time as well. It's not that she was concerned, it was her delivery which felt extremely abrupt and almost like it was meant to call me out or something. I didn't respond to her immediately because I was exhausted and grappling with medical care, and she sort of panicked and emailed me back several more times before I could even respond, saying she was sorry and that she realized I must be doing everything I could....
🤬😅😖
I think she also is very harsh with herself. Throw that in the mix with being highly religious and not very self-aware. Yikes.
Whew, yikes indeed! Sounds like she has big issues herself to deal with, and perhaps she even projects those same issues onto others... Still, understanding someone doesn't really help us feel less attacked, does it 😅. I had relatives who the rest of used to argue with constantly - it's not what you're saying, it's how you're saying it, flew right over their heads. 🤷 Pity her instead, I guess?
You're very welcome! Hope you're feeling a tad more cheery already ☺️🥰
I empathise with you Cobalt. The "invisibility" of this disease and the insensitivity of others often collides spectacularly. Alongside all the treatment advice given so well by others on here, I often feel called to remind people to be kind to themselves. Over the years I've become more brave at saying things calmly to people I want to stay in my life. Fir example "it upsets me when you trivialise my fatigue " or "it makes me feel stupid when you finish my sentence for me when I cant think of the word" So far the best people have responded brilliantly amd changed their behaviour the others I phase out from interaction with as much as I can.Now in case you think I'm a paragon of patience and virtue I've also been known to wish Pernicious Anaemia on my GP for a week when he was rude to me and i have answered someone who said "you don't look sick" with "you don't look stupid". So there's that!
Gosh a big move can be absolutely flawing and relapses occur. Some can last 3 months. So my goodness Cobalt, I think you are doing amazingly well that you managed a walk.
Now, unfortunately people say, interpret situations but are absolutely clueless. They have no idea how long, how hard we fight and what we live with. They are totally unaware that they haven’t got their own shenanigans together.
Feel free to rant or whatever you see fit.
People are allowed to nurture themselves, relaxation promotes healing. It is a necessity. It is how the body works.
Me, if someone called me passive. Well you have that or whiplash from my sarcastic tongue. 😘❤️
Erm, it’s in textbooks - the autonomic nervous system known as ‘rest and digest’. A friend and I have great fun helping people to relax. He’s a qualified hypnotist and sees a lot of clients who don’t know how to switch off.
Oh, Cobalt1312 I feel your pain! It's hard for people to understand when we have such health challenges and that lack of understanding often makes things worse. I made a conscious decision some years ago to divide people in my life into 'radiators' and 'drains'. I kept the radiators in my life close to me - the ones who uplifted and energised me.
The drains I consciously cut out. It's not to say your 'friend' means badly, but she's clearly not a good person to have around you. I found by not interacting with certain people and putting a distance between us (including some family, I have to say), my life and mindset was all the better for it. That could be done by limiting contact, or having no contact at all. It's yours to choose.
Ah this really resonated with me and even made me tear up. My daughter recently said to me I'm always tired and shouldn't have had kids. It's hard to explain the life limiting exhaustion to anyone who doesn't suffer from it. Moving house etc. is very stressful too.Thanks for posting, it was a good reminder for me that I'm not alone. There are people who do understand. Wishing you lots of happiness in your new home 😊❤️
Oh Ipsofacto01 i'm so sorry. May they never know what you've known ❤️ I said a few upsetting comments to one of my parents when i was younger and wish i could take it back now. They just don't understand but it doesn't make it less painful. Sending you virtual hugs 🤗🤗
Ipsofacto01 your reply really touched me and made me feel so grateful for this forum.
I'm so sorry for your struggles and the emotional pain you experience from grappling with exhaustion as a mom. Knowing that my post resonated with you instantly made me feel better. It's so lonely at times to struggle the way we do, and though I wish you couldn't relate it's so comforting to hear from you!
Thank you Cobalt1312. My final two are of to University this weekend and next weekend - UCL in London and Oxford. I'm so proud. Time for a little rest and a new part time job for a tired mum now. I will miss them dearly.
I hope you are settling in well to your new surroundings ❤️
What amazing feedback from jade_s Nackapan, KBird01 and Narwhal10! I can only add that once I recovered somewhat i.e. graduated from the bedridden, wheelchair and cane phase of this illness I now look perfectly normal from the outside. Friends and even family don't see the great turmoil that's roiling on the inside. Constant fatigue being one of them and that by itself causes what we thought were friends to just fade away. We don't go out so much, I mean going out in the evening is out of the question for me. On a good day I'm spent by mid afternoon and on a bad day, which I never know how I'm going to show up each day. But I'll convince myself I'm going to work today, I'm going to work today like a marathon runner on that last mile. So I'll get up, shower, get dressed and sit down on the couch just putting my shoes on. Exhausted I lean back and that's as far as I get. I don't go to work again. Lol my mind flutters and I've lost track of the point I was making. Oh yes, back to your friends seeing you as a perfectly normal functioning version of yourself yet you or we are no longer that and that does wear on relationships.
Well all that seems like the ramblings of a madman! 🙃. I thought about deleting it but I sure there's a message in there somewhere...
Thank you so much for this post Rexz! I am so glad you DID NOT delete it!!
I am imagining you in this daily occurrence, and being able to see you, I feel SO much less alone. Your bravery and strength uplift me and fortify me. You illustrate so well the struggle and how we yearn to be free of it.
If you are a madman, please don't stop rambling, because I relate! 😊
Aww thank you Cobalt1312 for your very kind words, is it improper to thank someone for thanking you? I do hope not. I'll continue to ramble at your request 😊
hiya, such comments that others see as innocuous or caring can have such a profound impact. Over the years I have got good at spotting gaslighting.
A core issue for you is asking yourself, do you want to keep this friend, and if so, to what extent? I’m still friends with one person who does these things, conscious choice due to our long history. Others I have cleared out of my life.
It’s important to be able to acknowledge your truth, and hold it firm in the face of insidious doubt (sometimes cast through people’s lack of awareness). Sometimes this means keeping it inside you, sometimes it means stating it clearly.
It is ok to say something like “I appreciate your concern, but sometimes I feel judged, and that isn’t helpful to my illness “.
Please can I suggest that you look up gaslighting and flying monkeys in relation to narcissistic behaviour? It might give you useful information towards making an informed and healthy decision about this friend…
All the best, it’s a tough decision when thinking about putting certain friendships in their place, but so worth it for your sanity x
earthnymph I love how you use the word "innocuous." You have honed in on one of the most intensely painful aspects of how we get invalidated. There is extra damage in knowing that "most people" wouldn't be bothered by or even notice the things that hurt us. If that made any sense at all?
"A core issue for you is asking yourself, do you want to keep this friend, and if so, to what extent? I’m still friends with one person who does these things, conscious choice due to our long history. Others I have cleared out of my life."
Yes. I also appreciate the reference to the flying monkeys.
"It’s important to be able to acknowledge your truth, and hold it firm in the face of insidious doubt (sometimes cast through people’s lack of awareness)."
YES and AMEN!!! Insidious is the perfect word for how others cast doubt, often through their own lack of self-understanding.
I have no shortage of people who do not understand they do not have enough information to instruct me. I do not know why they hold this belief.
I endeavor to share rather than instruct.
I rant and when I do it is vile. I used to sit in a chair facing an empty chair and rant at the person in the chair.
I now sometimes go to a bridge and rant at the river or stream. The river is strong enough so it is not affected. It still keeps on being a river and being beautiful without pause.
People really have no clue, they think they're helping with these motivational memes and poems, and it's just really insulting to the person.
Going a bit off topic, I'm a wannabe screenwriter (TV specifically). It's a hard industry to break into if you don't have contacts in the industry. I'd written a load of spec scripts for a TV show, and despite my best efforts couldn't get the producers to even read them.
A woman (can't really call her a friend, I only know her from Facebook) asked me for my email address as she had something that could help me. I thought "halleluiah I've found someone with a contact in the TV industry!!" started dusting off my awards acceptance speech. and she sent me a poem - that she'd written for me - about never giving up on your dreams 😕
Also, my mother had narcissistic personality disorder, I know other people with toxic parents via groups on Facebook. One of them kept posting these memes about controlling your own emotions and reactions to whatever life throws at you. Complete total and utter victim blaming. I said so and the woman got mad angry at me (oh the irony!) because it is up to me to regulate myself, my emotions and my behaviour, despite the abuse I suffered 😢
Reader, I blocked her.
Annndddd *swerves back to topic* I haven't done any housework (other than laundry and loading the dishwasher), due to the persistent fatigue for over 5 years. And I have an allergy to the dust that's in the house (yes, that's a thing! - I could go into details as to what I'm allergic to, but I don't want to give people the heaves!!) So even though now I'm better able to do things, I can't without making myself sick.
Because I'm fed up of explaining my illness and incapacity to people, I tell them I have OCD. A [former] friend of mine who has Monk (the TV show) levels of OCD offered to facetime me while I was cleaning the kitchen. She actually thought having someone to chat to would help.
"Okay" I tells her, "next time you're out of the house and need the loo, facetime me and I'll chat to you while you use a public toilet."
A woman who used to live near me took pity on me and came to help me, then decided she had OCD and couldn't help me any more, then decided actually she'd cured herself of her OCD. How? I hear you ask. When she'd had a baby 🤨
Maybe I'll start telling people I have a medical condition and I don't have the energy to clean!
Pardon the rambling, suddenly had a burst of energy!!!
Yikes some people. Tell them you have fibromyalgia, that elicits so much sympathy. And we all probably do have this "syndrome" with untreated B12 so it's not even a lie 😂
I'd probably get mocked by someone for saying I had that!
I spend ten years telling people I had depression, since that doesn't have a "look", and people pffted at me because I don't have anything to be depressed about!!!
Saoirse2016 thank you so much for responding! Wow!! What an upsetting experience 😖
I don't think sharing about your screenwriting experience is off topic at all. It's another example of people inserting themselves, thinking they are being helpful but massively stepping in it. It sounds like some of the friends in your facebook groups are just as invalidating! I think people oversimplify because they don't have better tools, which feels like crap to on the receiving end of. It's crazy making!!
It seems to me that to a certain degree, people adhere to the belief that we "choose our emotions" because they are deeply, and oftentimes subconsciously uncomfortable with what they or others are experiencing. If that makes sense? I have a friend reminds me a bit of your Facebook group friends posting these memes about controlling your own emotions and reactions to whatever life throws at you.
She will essentially avoid talking to me if I bring up feeling sad or mention a difficulty in my life, because SHE cannot cope with her own hard emotions. She doesn't ask about my experience, she tries to change the topic or say some dumb and cheerful thing that puts the focus back on her. She also puts people down who do want to talk about their feelings. She is sort of one of those "see no evil, hear no evil" types who is a bit of a jerk for it. She is so uncomfortable with any negative emotion that I think it really hinders her, but she is 'happier' not ever being challenged. Now I'm ranting about another invalidating friend! 😂 I have been distancing myself from her slowly and I feel better for it.
"Because I'm fed up of explaining my illness and incapacity to people"
Yes 🙌🙌🙌 It gets overwhelming and exhausting, beyond not having energy to start with.
Don't apologize for processing your experiences my friend, that is how we make sense of them!!!
Thank you Cobalt! I could have gone on for hours and possibly crashed the site typing up examples of people's indifference to my issues, whether they're medical or emotional or whatever...
I keep saying I'm going to write my memoirs, but I never get around to it! A few years ago I did make a start and I was typing up a storm, then the laptop died on me and unless I can get the hard disk out of it, and get someone to retrieve the files, I've lost all that work! (as well as photos of my cat!!!!)
Btw, remove the hard drive then there's a USB adapter and you can just plug it into another laptop.... Then you can access all your files just as if it were an external hard drive. So all is not lost. 😊
I've had the same issue with a different laptop, pretty sure it's the motherboard that died on me.
It's a sealed unit, and I can't get the bottom off to get the hard disk out. I did take it to a shop, but a week later he still hadn't looked at it, so I took it back home.
Ah so nice to see a fellow rambler! Please keep rambling. Well said, definitely feel your story. Who knows, maybe one day all of us PA'ers will wake up and discover to our amazement that we were in a poorly written play...
But one last thing, next time when you "swerve" can you please not do it at 90 miles per hour! 😂. Or maybe its kph where you're at. Whatever kph is. Oh geez my mind is going mushy! 😆
I often think I'm a character in The Sims, and the person playing fell asleep, or something, so I'm walking around in circles occasionally waving at the sky and yelling! 🤣
Fasten your seatbelt, I swerve very fast, and very often!!
I get regular therapy and this is why. I feel so judged by almost everyone I know. They have no idea how hard I have to fight to just get out of bed and do a few little things, along with required self-care, only to feel too exhausted to read, watch tv, and sleep. I am so sick of condescension that I have nearly given up and it is darn lonely. I can "pretend" my way through social interaction, but as life goes on, I am noticing that more and more if someone even bothers to ask "how are you?" they either don't listen, or don't really want the answer or say nothing if I dare give them the real answer. People often tell me, "People don't know what to say." Rubbish! It takes a second to say or text "I am sorry." That's it. That is all that needs to be said. However when someone ignores my misery when they ask and I give a (white-washed answer) well, that is becoming more than I can take. I seldom answer phone calls or texts or emails from the few people who reach out because unless I can fake my way through the interaction, my suffering is to be kept to myself. I am almost 69. I have been sick since my mid-40's. I have tired of being inauthentic to make others comfortable, so mostly, I stick to myself. (and my husband...who is the only one who understands and really cares)
The "how are you?" Question. I've found it more and more difficult to answer that myself. I think I've grown tired of answering it primarily because I no longer know...
Mostly now when my doctor's ask me that question, I think for a moment, look at them with a blank stare on my face, and say "I just don't know.". Then I go on to explain that I felt so poorly or crappy for so long that I've long forgotten what it is to feel good or great. I've lost my reference. Like am I feeling good today, or am I feeling crappy, but crappy is just better than the really more crappy that I felt yesterday.
It's now impossible to answer the "how are you" question within a reference range that my doctor's, friends, or family, would truly understand.
EiCa thanks for your response, I'm so glad you're sharing with us!! I really identify with what you said about keeping mostly to yourself and your husband. It's really hard to have the same sort of experience over and over of people not listening or not really being authentic when they ask how you are. I also hear you about the loneliness. It's hard because when we're sort of least able to social may be when we most need the support, but being as tired and sick as we are, even people's genuine attempts to be kind and comforting can end up feeling overwhelming or triggering. Sorry for my long delay, I ran out of steam and needed to recharge to be able to thoughtfully reply. Sending hugs
Thank you Cobalt. I should have told you that you need not reply. I know just how much energy it takes to do almost anything sometimes. I appreciate your effort, though, and the fact that once in a while this topic comes up, because I think it is a big part of the disease we share...the alienation and marginalization of a serious condition. It's interesting that certain diseases get so much empathy and attention (cancer for one) but a disease that can be as debilitating and disabling as a person on chemotherapy or radiation, gets a dismissive response or none at all. I have come to feel that I would rather suffer for a few years with cancer and die, than live with the more than two decades of B12 deficiency, and all the "invisible" but ever-present symptoms that I continue to suffer with. However, that is not my fate in life so the fight goes on...albeit with a very small army of allies. You got an awful lot of replies but I am not surprised. I hope this support from this lovely forum helped. Take care.
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