The challenging struggle of long COVID

One thing I learned from chronic illness is that it’s not possible to understand what chronic fatigue is unless you have it. I got it from an autoimmune rheumatic illness, but when I heard about long Covid I knew exactly how serious things were going to be for these patients. How their issues would be dismissed because they “look fine.” My disability took many years to develop, so I had time to adjust. These poor folks got hit with it virtually overnight. I’ve seen friends who were forces of nature before lose everything to fibromyalgia as their doctors told them it was all in their head. This kind of disability is one of the worst things that can happen to you. There are no effective treatments for chronic fatigue. Everything is a struggle. I only hope the research Covid inspired will lead to a better understanding and some kind of relief for these desperate folks. Chronic illness is a lonely business. You lose everything that gave your life meaning. It’s the most helpless feeling.

I got pushed out of the medical system. Absolutely no assistance at any level from the medical professionals for my Long Covid. One neurologist said I was just getting old. I was 50 at the time and suffered periodic dementia. Along with about 50 other symptoms. After about 2 years of being sick I got better. Hearing these stories brings back so many painful memories. Helps me see how far I've come. Brain being cooked is pretty accurate. Like a spicy concussion with a side order of depersonalization.

A dear friend contracted COVID in March of 2020. She was hospitalized for 3 weeks and almost died. Nine months passed before she was able to return to work. She continues to suffer from extreme fatigue. Her physician doesn’t take her complaints seriously because all of her test results are normal. She gets home from work at 4pm and is usually asleep by 6:30pm. She used to love gardening and had the most beautiful yard in the neighborhood. Now she barely has the energy to keep a few houseplants alive. She survived but her quality of life is much diminished.

My prayers go out to these people.

There are people out there who still don’t know what long covid is and when you tell them you’re suffering from it, they’ll look at you like you’re crazy. Today is my 1 year anniversary with long covid. I did everything I could to recover from it but it has taken over my life. My life is on a pause because I am waiting to recover but at times I feel like I am wasting my time. We need more research, more answers and more help to be able to live with this mysterious virus.

Our government doesn’t give a crap about the people. We’re all screwed.

I’m a 33 yr old guy who’s been struggling like hell for 17 month now. I was a totally normal guy with a great career living on my own. I’ve been forced to take a leave from work and move back w parents. It’s absolutely devastating. The ungodly fatigue that I have is the worse by far. You could not imagine how it feels unless you’ve experienced it yourself. And I got it before the vaccine so to anyone thinking it’s the vaccine no, though I will say that can also cause similar problems and those people aren’t getting help either. It’s awful. We need help now! There is a drug in development in Germany called BC007 that can help us but we need politicians to step in and fast track it!

Sending hugs out there to all of you suffering from this.

I had my third bout of Covid in February this year. I had it when it was first discovered in January 2020, then again in March, 2021 and again in February, 2023. The first time was so bad, I thought I would die. The second was the worst because I was hallucinating and went into fits where I tore my clothing and bedsheets. This last time was much milder, but no picnic. Now, I'm left with impaired memory, vision alterations that have made my glasses useless, and serious sleep issues. For a month, I lost my sense of balance and nearly killed myself falling to the pavement when stepping of a curb downtown. I'm still foggy, can't do arithmetic, suffer from bouts of severe depression and anxiety, and just feel like I'm half the man I used to be. Long Covid is not a fantasy. It does exist, but my doctors can't give me any treatment because they know so little about it.

I feel like people who don't have long covid have no idea it could happen to them. It can. Stay safe.

This is terrifying. It's been 47 days since I got Covid, so it's not yet long covid, but I can't imagine feeling like this for years as some of these people have. My heart hurts for them. My biggest issues is dyspnea and asthma. My asthma is out of control. I have to use my nebulizer every 4 hours (I used to use a rescue inhaler maybe once a month, if that.) ... nights are getting a little better. I used to wake up at the 4th hour but can now sleep 6 hours before I need a treatment. My shortness of breath is a little better. I used huff and puff just standing up. Now I can walk across the room or to the bathroom without gasping. Doctor told me not to worry. That my symptoms were normal. I am frequently hoarse from coughing. If I sit still my symptoms are under control but moving, walking starts me coughing until I vomit. My ribs ache from all the couging. My heart races with movement. I have to take naps. I am a singer and I was supposed to start teaching voice this month but I had to cancel everything. My voice is hoarse from coughing and while I do breathing exercises, I am pretty sure, singing will making me cough. Not to mention, I worry about the damage the couging is doing to my vocal cords. Many of my family have had Covid but none had symptoms after a week or 2. My husband was only sick for a day and a half. We are both fully vaccinated. I pray my doctor is right, that this will be all over in another month or so. To see how this illness has devastated so many young people with the long-term effects, breaks my heart. And I have to question, are those in the know really doing anything about those suffering from long-term Covid. And why on earth isn't this talked about more so people quit acting like everything is back to normal or that Covid is no big deal?

This greatly angers me....2.5 years later and health care doesn't seem any closer to helping people with long covid ....and our health care system continues to fail them...similar to decades long problems with the VA, Workers Comp....I have a close friend who continues to fight through this illness and our broken health care system...

I still have brain fog and fatigue. Every day is a struggle. I have learned to adapt. Please stay safe. It is not a cold.

I wish there wasn't so much backlash against masking, vaccines, lockdowns, etc. Every year that goes by, I see more people around me getting sicker and having worse symptoms that last for longer. If this trend continues for enough time, it could be a huge global problem for the economy, the workforce, for everything.

28 years old, no health problems before Covid. Still suffering daily 2 years post Covid. No help, No answers

So many are willing to dismiss Covid, because it doesn’t play into their need to delude themselves.

People with chronic fatigue syndrome have been dealing with this for decades..

Thankfully I don't have any evident pain but the digestive, cognitive, heart issues, andy jaw snapping shut when I'm trying to sleep just lead to constant exhaustion. But the worst by far is the tremors. I can sometimes see parts of my torso move on their own, and it took me an embarrasingly long time to type this.

I've never been the same either since getting covid. It's like I'm aging faster because of lack of stamina. And the same here, I've been diagnosed with Long Covid. But no explanation on what's wrong. Something is wrong with my heart but even after all of the major testing and images etc no answers as to why it's not pumping correctly. It's so sad what has happened to all of us dealing with this... God be with us and continue to give all of us suffering, the courage to keep moving forward. Let's all keep the faith.

And yet, no one (person or government) has been held accountable.