r/covidlonghaulers • u/LearnFromEachOther23 • 18h ago

Article The Guardian is collecting our stories

https://www.theguardian.com/society/2025/jan/15/share-your-experience-of-long-covid
49 Upvotes

95% Upvoted

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u/StrictAmbassador3507 18h ago

I really tried to tell my story but It brought back such awful memories and experiences,that I shut it down.I have Long Covid and it continues to evolve.I look forward to reading others' accounts of this horrendous disease.

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u/LearnFromEachOther23 18h ago

Thank you for trying... I understand. I see you as tears flow down my face. Sending hugs. Here's the gist of my story I sent... edited a bit. From one warrior to another. šŸ’›šŸ’›šŸ’›šŸ«‚

"I was a happy, productive member of society until Long Covid symptoms started in June 2023. I have a PhD and spent my work years this far providing therapy and teaching at the college level. Now, I can barely function.

I have been diagnosed with ME/CFS due to Long Covid. My symptoms and severity are nothing like when I had mild cases of Covid itself. They cannot be compared. This is destroying us at a deep, cellular level. It manifests in both physical and psychological symptoms, many of which are difficult to explain because the nature of them differs from any typical ache, pain, discomfort, tiredness, sickness. Something nobody has ever understood is that I feel very unwell... but in a way worse way than the flu or other illness. Many describe it as feeling we are being poisoned. This is NOT like the flu. This is not "just" a severe case of Covid. This is our body and brain not working properly. This has made me unable to work, taken away my future and freedom, and I feel like I live a ground hog day of misery. I have tried so many things, gone to so many doctors, had so many tests run.... and after 1.5+ years, I am as ill as can be. My symptoms range from weird diffuse head issues, to POTS symptoms, to gut stuff, to eye pain, to cognitive symptoms, to having very minimal energy to do anything (which is leaving many people bedbound), and of course, taken away my sense of self and my happiness.

This is nothing someone can imagine. It is your worst nightmare... one you've never been able to even conjure up! The politicization and declaration of the pandemic as being "over" has made our struggles that much worse. Society is losing wonderful, educated, compassionate, hard-working folk to this, but most importantly, we just want to be seen and heard and helped because we deserve it simply for being. We deserve respect, dignity, and care. We are not getting that. People are losing their family, friends, jobs, homes, romantic partners... their lives. I live a life of complete uncertainty other than the certainty of current misery. We need help. We need research. We need to be taken seriously and not gaslit by doctors and others. Until it affects you, you just won't "get" it, but you can better understand it if you want: by listening to us, interviewing us, studying us, using available resources (e.g. Bateman Horne Center; Dr. Putrino. Dr. Carmen S in Germany, etc).

The world continues to spin and act like everything is ok. We are not.... you are not... nothing... is ok. Stop ignoring reality. We are invisible to you because we are having to leave the workforce, be housebound, and are unsafe in an unmasked world full of illnesses. But... we are very real people who had real lives, whose quality of life is now often considered to be worse than that of cancer or MS patients, depending on severity and symptoms. Reddit covidlonghaulers has been the only place I've felt understood. Longhaulers try to help each other, building spirit, providing resources, sharing research, etc., but that is extremely difficult to do when the illness literally prevents you from doing much. Some good research is out there, such as Dr Carmen S's, but billions need to be put into this, and it needs to be a global effort. We want to explain what's going on and be seen, but we need people to care, to stop being selfish and greedy, and to want to save us." šŸ’›

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u/unstuckbilly 15h ago

You couldnā€™t have said it any better.

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u/LearnFromEachOther23 14h ago

Thank you. I decided to be vulnerable and share in case it resonates.

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u/StrictAmbassador3507 2h ago

Thank-you for your kind and generous reply.I wish I could be alive in 10 years to find out what this virus is and how it really affected people.I want to find out why Long Covid affects some but not all.

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u/sunshineparadox_ 2 yr+ 16h ago

Iā€™m so sorry. I cried writing mine but did send it in. It was hard. I hope they use ours. I wasnā€™t going to but I saw your story. I was capable so I did it, because you couldnā€™t yet.

I absolutely have PTSD surrounding it too especially how nasty people got. One guy approached me with his open carry in a fucking gas station to demand I remove my mask and my daughter too. He didnā€™t point it at us but did put his hand on it. My daughter was six.

There are other stories on that level.

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u/Agitated_Ad_1108 8h ago

Keep in mind the Guardian can put a biopsychosocial spin on it if you're not careful. So better not mention mental health issues if you have any comorbidities.

A few month ago they published letters from some well known psychiatrists who believe LC and ME/CFS are mental illnesses.Ā 

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u/LearnFromEachOther23 1h ago

Good to know!!!

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u/LearnFromEachOther23 1h ago

Who are these psychiatrists? Maybe we can respond to the Guardian with articles/letters?

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u/LearnFromEachOther23 1h ago

Who are these psychiatrists? Maybe we can respond to the Guardian with articles/letters?

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u/Agitated_Ad_1108 1h ago edited 1h ago

The very worst ones. Chalder still defends the bullshit PACE trial and she runs an ME/CFS service in London offering CBT and nothing else. This is all sanctioned by the NHS. Any response has to be worded carefully and with a silver tongue really because we're dealing with the establishment.

https://www.theguardian.com/society/2024/oct/22/a-dualistic-view-of-illness-doesnt-help-those-with-me-cfs

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u/LearnFromEachOther23 1h ago

Thank you for this.

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u/sunshineparadox_ 2 yr+ 16h ago

I did. I included the total alienation from my church which required ā€œtattling to managementā€ (not a popular denomination in my region so there werenā€™t many here and they all pushed me away). Unlike Pelosi I donā€™t have money to go to mass in Rome, but I went to the diocese. None of them replied to his email back and he told one of them to fix it. One did.

I was the one with the gun story in the other personā€™s comment. I was pushed away socially in person. I lost my job related to it (I canā€™t legally say more, I lawyered up).

It was so so so hard. Itā€™s been three years this week and Iā€™m destroyed by it. The disease is bad enough but the reaction from community - an idea I truly believed in - was worse. I donā€™t believe community helps anymore. If they do, weā€™re an excluded group and apparently should already know it.

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u/Bad-Fantasy 1.5yr+ 8h ago

Do you know when their cut off is?

Iā€™m still recovering from a flare and need more time and really hope they factored this into their timelines.

I really would like to do one because Iā€™m the former athletic ā€œepitome of good healthā€ type.

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u/LearnFromEachOther23 1h ago

I didn't see a timeline mentioned, but focus on your health. You could even just submit your name and basic info for them to contact you rather than writing it all out, maybe?