What is a pity party, anyway?
Well, let me tell you . . .
Have you ever had something go wrong and then it snowballed into a million other things that went wrong? If so, you probably know what I’m feeling right now. And therefore you probably don’t need to ask what is a pity party. You may even know a variation of the anger I feel and how it has led me to do and say things that have probably made matters worse and caused more things to go wrong. It’s the very definition of the domino effect.
But the thing I struggle with the most when things go wrong is feeling sorry for myself and complaining about it to other people. I haven’t mastered the art of acknowledging that things are not going my way while avoiding the bitterness and sadness that often consumes me, the people I talk to, and ultimately, makes the situation worse.
I don’t know how to say: X happened, I don’t want pity, now let’s move on. Well, I do know how to say it, I just don’t know how to stop there and not say anything more. I don’t know how to stop myself from expressing every detail of my suffering because it feels justified and it feels like the only way I can even remotely cope with what I’m going through.
It starts when I acknowledge that something is wrong and then dive deeper into sadness and end up sounding whiny and sorry for myself.
It’s hard to walk that line because I feel a need to acknowledge when things suck — I can’t pretend that being bedridden and unable to speak is normal. And I shouldn’t have to. There are programs that teach people not to acknowledge the physical symptoms of being sick. But just because you pretend something isn’t there doesn’t make it go away. In my experience, it only makes the problem worse because, well, I go a little crazy when I’m in excruciating pain but pretend I’m not. It makes me feel like what I’m experiencing isn’t real.
The other reason I don’t want to pretend everything is okay is because I want other people to know when I’m going through something. Not because I want their sympathy, but because it’s not normal and when you pretend that a sick person isn’t sick, when you pretend they’re perfectly fine, it can be detrimental to their health. I’ve learned that lesson the hard way.
The hardest part about acknowledging that things aren’t going well, and getting others to do the same, is it can look like I’m seeking attention and want pity. I don’t though. I think most sick and disabled people don’t want pity, but we do want fair treatment. We want to not have our struggles swept under the rug. But some healthy people misinterpret that as wanting pity and attention. But there’s a big difference. Wanting pity is getting satisfaction when someone feels sorry for you. I never feel good when someone shows me sympathy. If anything, I feel worse. I feel bad about myself and ashamed of my circumstances. Either that or I feel angry because I’m being patronized.
When life sucks my goal is to say: This is shitty, I want to fix it, or at least acknowledge that it’s not right and move on. I don’t want to say: This is shitty, don’t you feel bad for me?
And while I never actually say the latter, it feels like that’s what some people perceive. Or maybe my own insecurities lead me to feel that way. But more likely, it’s a combination of my insecurities mixed with some people being ignorant.
That’s just how it goes, I guess. I don’t have a solution to feeling sorry for myself, but I am actively trying to avoid it. I find it incredibly challenging to struggle, and acknowledge that I’m struggling, but not dive into the world’s biggest pity party.
The other day, for instance, it was difficult for me to acknowledge that I was too weak to even brush my teeth without letting the enormity — the thick weight of that statement — bear down on me like the profound weakness I was already feeling. But maybe that’s just how it has to be; for now, maybe that’s how it’s supposed to be; And I don’t know, maybe I’m meant to fully feel the weight of my situation.
BEFORE YOU GO…
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Good piece of writing. I also know people that don’t want people to feel sorry for them. Their sympathy gives them negative vibe.
Thank you 🙏
I know the days of not having enough energy to brush my teeth. I can do more than you can, but SO much less than even a wimpy normal person.
I hear you: not bearable. Yet we bear, because we have no choice. I don’t need your pity, unless it leads you to contribute millions to a research scientist who finally figures our cause, treatment, and cure.
But we can all acknowledge it gets very bad. Acknowledgement is not pity; it is truth.
I’ve learned to say, “I’m not okay, and that’s okay… but I’m going to need a minute.” It’s not wrong to feel what I feel, but I acknowledge that no one can fix it…nor should they feel obligated to. I guess it’s just my way of expressing that I’m struggling, and my attitude isn’t personal. Empathy would be appreciated, but please excuse me while I release all this ugliness before I implode. I think it’s a vast improvement over my previous statement of, “I hate everything.” Lol.
You are so right; it’s challenging to find a way, the right way, to express how we are feeling. I also just want acknowledgment, not pity. I want to tell somebody else because sometimes it’s hard to carry alone. It becomes very isolating to keep on keeping on. Thanks for writing this. I hope today is a good one for you.
I hear you Jamison— Much love
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Right there with you!
The thing about needing someone to care for one’s basic needs makes this especially difficult because you have to be able to communicate your status to them. Like, “sound and cognition is really bad today. Use as few words as possible.” Or whatever it is on the day.
It was totally different when I could function independently as long as food and clean laundry showed up. I could check out and watch TV or at least find a level of (non) activity that didn’t force me to evaluate things every day.
Sometimes I get started and just rant the laundry list of everything that’s sucking (now that I can). I hate it. I don’t really know why I do it, because I don’t want pity either. Maybe I want to be seen or acknowledged, which I think is slightly different. If I don’t get to be complacent, I want them to not be either? Or maybe I just want them to know why it is very important to use few words or whatever is the thing at the time. I think some days it’s one and some days it’s the other. I am not always the person I want to be.
Sometimes it feels like a fantasy to be able to set aside the burden of feelings that comes with our illnesses and disability. It seems like the least “normal” people could do is acknowledge that it sucks; it’s not a desire for pity and not a wish to take it out on anyone. It’s one of the reasons I dislike when people that know ask nonchalantly “how are you feeling?”. Sometimes I just feel so mad inside, because it feels like such a simple question to them and it’s such a loaded question for me, where they’ll feel obligated to show pity or something. Meh. When and where can I get off this roller coaster?! 🙂 Spoonies understand how you feel and the guilt with it. Thank you for expressing that battle that we don’t like to talk or think about!
Yeah, this stuff just sucks big time all the time.
I agree with Alicia. The facts of what you feel are facts to you. Validation is not pity. Frustration with people who TELL you what to think or how you should feel IS A FACT, not a complaint. IT is normal. No one has the right to invalidate your experience. For most of us, medical people and sometimes family just do not want to hear about it again. I think they don’t know how to respond. Doctors always want to fix it and if they cannot, then you are out on your arse. For others. FXXX em if they cannot VALIDATE. Validation is recognition or affirmation that a person or their feelings or opinions are worthwhile.
When someone says to me, Oh, I am so sorry that you are feeling terrible, ” I say, don’t be sorry, I am not sorry, I am sick as a doorknob. Despite being lifeless, and feeling a waste of up space, I feel pressured by exhaustion and pain, and btw, doorknobs don’t think.
“But you sound fine.” Yeah? That is circumlocution and I do it really well, like a James Joyce novel and if I keep on a roll for another hour I will put you to sleep because I am a lateral thinker. bebop… bebop, so if you don’t know what that is my brain will be happy to tell you and so on.
I don’t know what you do about the bitterness and sadness. Write a rant? Tape a rant, so you can hear yourself? Is a rant bitterness or anger.? I learned a long time ago that for me, anger, BIG TIME, takes too much energy. I had to toss it overboard, but it spills out when my brain cannot handle one tiny bit more of anything.
I think we all have a need to feel validated whether sick or healthy.
And don’t forget, this illness is our world especially for those of us whom are house/bed bound.
If we were working or studying etc, we’d have other things to think and talk about.
I often apologise to friends and family for ‘going on’ about my illness, but tbh what else to I have to talk about? Not much, mostly the tv I watch as that’s about all I can tolerate anyway!
Guys, I think we need to let ourselves off the hook! Our illness can make our lives shit, that’s a fact. And if one more person tells me to be positive then I would punch them if I had the energy 😂.
I’ve got one of my best friends visiting me next week and she loves to talk and tells me every detail of her life which is great because mine hasn’t changed much since the last time we saw each other at the beginning of the year! Well, not unless you count a visit to the hospital, phone calls with the dr and prescription changes😆. So, I’m glad she’s chatty as I know in relation to my situation she finds it difficult how to respond.
Most of the time I’m guessing most of us are just factual in our correspondence of our situation. But you know, so what if we need attention once in a while! Doesn’t everyone? Sometimes I need attention because quite frankly I’d over dose otherwise. But, I’m not doing it all the time, not enough for my friends to ‘defriend’ me!
Ive been feeling very low and lonely recently. I haven’t splashed it out on Facebook, but when friends have messaged me and asked how I am, I’ve told them. But I know whom I can reveal the darkness of my soul to, and whom I can’t.
We all have different levels of friendship and we just need to be aware of that. If I know I’m going to be deep and meaningful, then I often start by saying , “I don’t expect any answers or even to reply to this message, it this is how I’m feeling at the moment”.
I no longer pretend with people as this is my world, my reality, but I also keep my replies short and sweet so to speak. And if they can’t handle, or don’t want to handle my reality then they are free to press the delete button😊.
Much love to you all as we surf this wave of absurdity called life ❤️
Hello my name is Tiffany. In searching for ebv and chronic fatigue your post came up and it resonated with me. I was a really active person almost too active my whole life. Eventually I had reactivated mono and my problems began. My mono lasted so long and would go away for over a year until I used monolaurin. The die off was so bad. But nothing is worse than losing what seems to be my life. I’m chronically fatigued all the time. I can no longer exercise I’m too exhausted. I can barley sleep at night or even get through the day. I’ve experienced numerous neurological symptoms from the ebv while I had it and now as well. I’m so sad because I’m only 24 and this has gone on for years. I’ve been to so many drs and I can’t get an answer. I’m not bed ridden but I’m not exactly able to do the things that once made me happy in life. I really feel for you it’s such a hard time in my life and most the time I don’t want to live anymore. It’s sad too because people see me and don’t understand why I’m so tired when I look normal. It’s so weird that there’s so many cases in relation to ebv and yet drs don’t know what’s going on. I don’t know what to do honestly 🙁
Hey Tiffany! Damn I’m so sorry that you’re struggling with EBV too. It really is bizarre that so many of us started out with it. Hopefully we get some answers soon. Thank you for sharing your experience here. It’s always nice to connect with others like me.
Jamison, your story really touched me! I also have mercury poisoning, I promise you there is help. Dr Andrew Hall Cutler was a biochemist who discovered he’d been poisoned by his amalgams, and developed a protocol to reverse the many neurological conditions this causes. Dr Cutler wrote a book describing all of the associated deficiencies and diseases that have functionally been treatable with the protocol. He wrote Amalgam Illness, Hair Test Interpretation and The detoxification Manual. all of his findings are available for free on his facebook page, complete with an amazing support group to walk anyone through the protocol, but the newbie flow chart is pretty concise. best wishes to you.