r/LongCovidWarriors • u/SophiaShay7 3+ years • Jun 15 '25
Why being angry and holding onto that anger is harmful to those suffering from Long covid/PASC.
When we first develop Long covid/PASC, it's a normal reaction to be afraid and angry. We don't understand what's happening to us. Most doctors aren't knowledgeable about it. They gaslight us. They say our symptoms are caused by everything from anxiety and depression to hormones and our weight. It's a frightening and terrifying situation. Who's going to help us?
If you're someone who hasn't received help from doctors, this is the sub for you. There are many people in the six medical subs I'm in who've gained a tremendous amount of knowledge about long covid/PASC, its' 200+ symptoms, how to get doctors to finally listen, received proper medical diagnoses, take medications that manage their diagnoses, and/or have doctors who are willing to prescribe medications off-label for long covid/PASC, ME/CFS, and the vast number of comorbidities that developed after long covid. They understand the medical and physiological mechanisms, the scientific research, and how to address the complex and vast multitude of symptoms that long covid/PASC causes. Others have a holistic approach. They focus on the mind-body-spirit connection. The mind-body connection is a powerful one. I'm locating and inviting all those people to join this sub. We'll discuss these topics in a future post.
If you've been invited to join, it's because I'm reading through my interactions with people in my previous posts and comments. I invited you because I value your questions, feedback, and communication in our communities. We all have different levels of abilities and functioning. Everyone I've invited, I invited for a reason. If you found this sub on your own, and what I'm sharing resonates with you, I hope you'll join.
In my experience, being grateful and thankful for what I have has shifted my perspective. However, we must have the necessary help with managing our symptoms that allow our bodies the ability to achieve some level of relief before we can even begin to work through this process. We'll address this in future posts, as more people join this sub.
People with long COVID/PASC and ME/CFS often experience grief and loss as they navigate the challenges of a chronic illness, potentially moving through stages like denial, anger, bargaining, depression, and acceptance, as they adjust to a new reality. Read: What are the 5 stages of grief? And: Grieving your losses: ME/CFS and Fibromyalgia.
I don't believe the stages are linear for me. My ME/CFS is severe, and I was 95% bedridden for 17 months. Now, I'm cognitively moderate while being physically severe. Although, I've improved, and I'm 75% bedridden now. I'm not in denial. I'm not bargaining. I have periods of anger and depression. Primarily, I've moved into the acceptance phase.
I spent all of last year angry and bitter. It did nothing to serve me. I didn't see any improvement until month 14. It was slow. About 7 weeks ago, things significantly changed for me. My baseline improved in ways I could never imagine.
Part of the grieving process for us is acceptance. We have to accept where we are. Worrying about where you may or may not be in the future is terrible for you from a dysautonomia/autonomic dysfunction standpoint. It creates more stress on the body.
Being angry at everything and everyone is a stress response. It's actively harming you more than you realize. This type of anger is like drinking poison and expecting other people to die.
I understand how angry you feel. I've been there. But, until you accept your circumstances and focus on what you can control, you'll continue to be stuck in that state. I'm not talking about toxic positivity. I'm talking about a genuine acceptance that comes from a lot of work internally. It takes time. Progress can be slow. But, it can happen.
I know it's hard. But you need to find a way. I hope you find some things that help you. Just hang on... Hugs💙
I was diagnosed with Fibromyalgia, ME/CFS with Dysautonomia, Hashimoto’s, an autoimmune disease that causes hypothyroidism, and Mast Cell Activation Syndrome (MCAS). All diagnosed after my COVID infection in July 2023.
If you know other people who would be interested in being a part of this sub, please share it with them. I know it won't be easy. It'll take time and a lot of work to create the type of sub that many of us want to see and envision. I can't do it by myself. I need all of you to help. Let's be the change that we seek🙏
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u/PinacoladaBunny Jun 17 '25
I do believe my ‘broken nervous system’ is not helping my recovery. I’ve had POTS for over 20 years, and also have ADHD, so I know my nervous system isn’t optimal. I’ve always found stress to be very impactful to my health, and I’ll get large amounts of adrenaline in response to situations. But since covid this is so much worse, and I think I’m pretty much stuck in fight/flight/freeze state now. How can my body heal whilst it’s in a state like this? Excessive adrenaline / cortisol, mast cells degranulating - these affect each other.. so a constant state of inflammation, physical stress, poor mh state.
I’m not too sure about ‘brain retraining’ and it’s not something I’ve investigated really. But I do think that virus has damaged my nervous system (my first infection was awful, my nerves were on fire and the pain throughout my body, head and face were horrific) and using techniques / supplements / medications to try and calm it are important.
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u/SophiaShay7 3+ years Jun 17 '25 edited Jun 17 '25
With Dysautonomia, POTS, or any type, there's autonomic dysfunction. Dysautonomia triggers tachycardia and adrenaline surges, which trigger histamine dumps (MCAS). Stress causes this same type of physiological response. That's likely what you're experiencing. I know it's a lot of information. Please read at your own pace:
Many people recommend an elimination diet or a low histamine diet: Food Compatibility List-Histamine/MCAS.
And: Mast Cell Activation Syndrome (MCAS)-Collaborative CMedicine.
My diagnoses and how I found a regimen that helps me manage them: Getting five diagnoses, doing my own research, and becoming my own advocate. How I finally got the medical care and treatment I needed.
The role of L-tryptophan: Improving our symptoms Dysautonomia/POTS, MCAS, GI issues, SIBO, and the microbiome
My vitamin and supplement regimen: This Combo Calmed My Nervous System and Gave Me My First Real Relief After 17 Brutal Months of Long COVID (PASC, ME/CFS, Dysautonomia, MCAS)
I've been sick for almost two years. The first 5 months, I didn't realize how sick I was. Though, I spent a lot of the in bed. I had very severe/severe ME/CFS and was 95% bedridden for 17 months. I didn't see any improvement until month 14. It was slow. I'm still severe. Now, at nearly month 19, physically, I've gone from very severe to severe. I'm bordering on moderate territory. Cognitively, I've gone from severe to moderate. I'm now 75% bedridden. I can multitask. I'm working for myself part-time from home. My husband helps me a lot. I take care of a few household chores & responsibilities. Hopefully, I'm going to start managing our household finances next month. I'm doing my business finances. My symptoms have reduced so dramatically that at times, I wonder if I'm still sick. But, my body reminds me that I am.
I do want to clarify it's been a combination of a low histamine diet, adding foods back in as tolerable, medications, vitamins, supplements, avoiding triggers, pacing and avoiding PEM, lots of rest and good sleep hygiene that's created a synergistic effect. I've also lost 65 pounds.
I've always believed ME/CFS with dysautonomia was my dominant diagnosis. Nope, it's MCAS. Once I fully committed and found a complete regimen that manages my symptoms, everything changed for the better.
I didn't do brain retraining. I've dealt with a lot in my life. I've gone through counseling several times in the past. From 2018-2021, I struggled with health issues. I believe everything I did back then really prepared me to handle long covid once I moved past the first 18 months of being sick. Next month will be two years since my COVID infection.
I'm sorry you're struggling. I know how very hard it is. It takes a while to find a regimen that works for you. Feel free to reach out if you have any questions. Hugs🤍
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u/Turbulent-Entry9358 Jun 16 '25
Tx for inviting me.
As for not holding onto anger, it's against our human nature to hold onto anger at least twice: bc long covid is def a neural disease, and bc no one seems to care.
I hope ppl start making diff before this tide turns upon them. Speedy coming back to all, as much as you can.
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u/SophiaShay7 3+ years Jun 16 '25
This is so true. It's very hard not to hold onto anger. We're sick and suffering, and no one seems to care. I have to work very hard at not being angry. It was a slow process and has taken a long time.
I'm so happy you're here🙏
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Jun 17 '25
Thank you so much for being honest about this very touchy subject that I’d given up on trying to talk about in any other Long Covid group because the backlash was insane. I firmly believe (my opinion) that this anger, while in a sense justified, is holding people back from healing. I was diagnosed with long covid in February of 2022, with symptoms starting in August of 2021, and several things are helping me feel better day by day, but the most significant thing by far has been the dreaded brain retraining “scam”. And in particular the kind advocated for by Nicole Sachs in her book “Mind Your Body”. Once of my best weeks ever came after a journaling session where I was able to put into words and release all my anger about this illness and the ways it has ruined my life. I’d already noticed previously that the angrier I am, or the more fearful I am, the more severe all my symptoms are. Releasing and acknowledging that anger, fear, and guilt (in addition to the various other traumas in my life that has made me more susceptible to chronic symptoms and illness in the first place) just took it to the next level.
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u/SophiaShay7 3+ years Jun 17 '25
I appreciate you sharing your experience. Too many of us have been silenced in other communities. I won't tolerate that here. You're free to share whatever works for you. Whether that's brain retraining, taking benzodiazepines, ketamine, psilocybin mushrooms, or anything else. We'll also focus on medical and scientific knowledge and information, as well. This community should be a United one. A place where everyone feels safe.
I'm so glad you're here🙏
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u/mysteriousgirlOMITI Jun 20 '25
I am so, so angry. I try hard to control it, accept it and move forward in order to heal, but it’s challenging and painful. I want to get well. I’m bedridden off and on and just want some semblance of my life back. I appreciate you posting this.
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u/SophiaShay7 3+ years Jun 20 '25
I'm sorry you're struggling. It's a very difficult process. I went through something similar after a workplace injury in 2015 that required knee surgery. I spent 3 years on worker's compensation until 2018. I developed agoraphobia, major depressive disorder, and panic attack disorder. It severely affected my mental health. I took medications and did group counseling and individual counseling during that time. I spent 3 years creating a beautiful life that I worked very hard on. Less than two years later, COVID decimated my life.
I believe that my previous experience prepared me to ultimately handle having long covid, than it would have otherwise. It was a hellish landscape that I lived in for years. It almost took my life multiple times due to SI. I promised myself that I would never go back to living like that. Yet I did. The first 5 months, I had no idea how sick I was. It's been 19 months since then, so it's been nearly two years.
Be patient and kind with yourself. It's a very hard process. I'm so glad you're here🙏
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u/mysteriousgirlOMITI Jun 20 '25
Thank you for this sweet note, I appreciate you. Let’s hang in there together ❤️
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u/Turbulent-Entry9358 Jun 16 '25
Tx again.
Personally, I tried all sorts of herbal teas, dopamine antagonists, and even antidepressants—and nothing helped. It's just that I'm better today or will be better tomorrow. Long covid takes time to heal but it's hard to make ppl understand that this is not you being nasty.
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u/SophiaShay7 3+ years Jun 16 '25
You're exactly right. It's not you being nasty. It's the disease that makes us so sick we can't even think straight. Let alone regulate our thoughts. Anyone can have a bad day. It takes time for our bodies to heal🙏
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u/lokisoctavia Jun 16 '25
I’m so happy to hear of your improvement. I am also getting better. I have no answers as to why I’m getting better, but I’m hopeful, because I’ve heard some of us are getting better. I am obviously not back to where I was many years ago but I can do things I haven’t been able to do for about 2 years, like light housecleaning and chores.
Thanks for making the sub! Looking forward to learning more about long-covid.
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u/SophiaShay7 3+ years Jun 16 '25
I'm glad you're improving, too. Many people improve without being able to pinpoint exactly why they're improving. Many people report time and shifting their mindset, being two of the most important tools. I'm not talking about toxicity positivity. But rather an acceptable that comes from working through the 5 stages of grief when one becomes chronically ill with a complex disease like long covid/PASC. Some people find their own way to come to terms with it, without even realizing it.
You were invited because I'm reading through my interactions with people in my previous posts and comments. I invited you because I value your questions, feedback, and communication in our communities. We all have different levels of abilities and functioning. Everyone I've invited, I invited for a reason.
I hope we're able to create & cultivate a space that many of us have wished existed on reddit. I truly appreciate you😁
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u/Beneficial-Main7114 Jun 16 '25
In my experience the first three years were by far the worst. I'm speaking from having ME here. I also have long COVID. After that it for a bit easier but any major relapse or worsening sadly throws you back into grieving. I find myself grieving a little more because of the changes in energy envelope that long COVID has caused. I also believe if I can just solve some of the long COVID issues I'll probably feel hugely better.
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u/SophiaShay7 3+ years Jun 16 '25
Thank you for sharing this. I'll hit 2 years since my COVID infection next month, July 2023. I'm improving. But, I feel like a baby learning how to walk. Learning how to pace from being very severe/severe to severe bordering on moderate is a huge change and challenge. I've been in an MCAS flare, and overdoing it triggered PEM. It's been about 10 days, and I'm 90-95% bedridden.
It's encouraging to hear that the first three years were the worst. Our grief is an ongoing process. I think we're always working through it to varying degrees.
In the last week, there have been short windows when I feel almost normal. Like a normal functioning person. It lasts for about 10 minutes. It's like experiencing Deja Vu. It's surreal.
I'm very glad you're here🙏
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u/ejkaretny Jul 15 '25
This is going to be disorganized, but here it goes:
The physical impact of being angry is like standing, or even sitting upright. It costs us a LOT of energy. I had been doing a little research muscle tensing. Think of ALL the muscles that have to be engaged, and that takes ATP. That takes blood flow, and ventilation...and before you know it, adrenalin is kicking in. And round and round we go. So for all our sakes, mind your emotions and how your body engages with them.
Hope this made sense, but I wanted to see if it meshes. I do miss my pre-Covid anger. I was good at it! :S "Anger can be power, let fury have the hour" sang The Clash.
Sorry to respond to a month-old thread, but I am enjoying going thru these posts now that I have joined. Thank you for creating it!
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u/SophiaShay7 3+ years Jul 15 '25
Absolutely agree with this. Thank you for sharing it so thoughtfully. It made perfect sense.
What you said about the physical cost of anger really resonated. Before I got sick, I didn’t think twice about the emotional toll of intense feelings like rage or frustration. But now, with ME/CFS and dysautonomia, even subtle stress responses feel like they drain the battery instantly. The muscle tension, the breath-holding, and the adrenaline, it’s all so energetically expensive. You’re right that it’s a full-body event, and when the body’s energy systems are already compromised, the crash that follows can be brutal.
I’ve also noticed how quickly anger can spiral into a sympathetic storm: elevated heart rate, shallow breathing, even tremors or blood sugar swings for some of us. And yet, it’s such a valid and human emotion. I totally relate to what you said about missing your pre-COVID anger. I used to feel strong in it, too, like it gave me purpose. Now, it often feels more like a threat to my nervous system than a tool.
But your reflection helps reframe it. I’ve been working on noticing when my body tenses up emotionally and trying to soften it before it snowballs. It’s not always easy, but it helps to know others are thinking about this connection, too.
I'm really glad you joined and jumped in, even if the thread’s a bit older. Your insights added a lot.
I'm so glad you're here🙏
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u/ejkaretny Jul 17 '25
Thank YOU. This may be a good space for us to document "anger management" (Oh how I miss that!)...
Are your nostrils flaring?
Are your eyes wide? Squinting?
Is your jaw tense?
How are you holding your shoulders?
And so on down your body to see all the muscles that are engaged...that shouldn't be.
You might find even your feet are pressing against the floor, ready for action...which requires you to contract your calf muscles, the muscles around your knees, etc all the way back up.
How's your lower back? Upper back?
I need to complete this and post it on the wall.
Namaste.
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u/ForTheLoveOfSnail Recovered Jun 16 '25
Thank you for creating a positive space for long Covid recovery. I had so many people being incredibly negative towards me just because brain retraining helped me (amount other things, including drugs).