Long Covid Awareness Day D.C. March 15, 2024 - Join the Demonstration

Excellent initiative. Here in Brazil, where I live, there is a lack of awareness, and it is very frustrating to see that Long COVID is rarely mentioned in the news, if at all. After consulting with five doctors who tried to convince me that:
a. I had depression
b. It was menopause
c. Go to Pilates, and it will be fine
d....whatever...
Now, there are at least two physicians who believe that I have the symptoms and acknowledge that the condition actually exists. However, we still face stigmatization here.
I don't know how things are in the US, but probably much better than they are here.

Thais, a most interesting perspective. From my POV, things aren't much better here, although Long Covid is beginning to hit the news just a bit. Overall, I believe we're a country in denial about Covid and eager to move on from it; nice if you can. As you read through the posts you'll see the same kind of frustration with the "help" those of us with LC (and lucky enouh to have insurance that pays for it) have been getting from our medical providers. Most of the posters are dealing with similar frustrations, and among the most common is that many doctors seem to know little or nothing about LC or how to treat it, and many of them simply deny it's existence, attributing the symptoms to (as you suggest) female problems, all in your head, and maybe malingering... etc. The LC clinics are few; there doesn't seem to be much uniformity in their various approaches, but they do provide validation and some helpful suggestions, and hopefully they're learning from us so clinical applications can be developed. . Please continue reading... one thing you'll find that IS comforting is that a lot of people on this Forum understand, empathize, and offer some pretty good suggestions. Good to hear your point of view...

@janeaddams is absolutely correct, it is not much better here in the U.S. I’m here in NYC and there are some LC Recovery Clinics and they do at least acknowledge that what I’m experiencing is real. My PC doctor doesn’t, his approach is to eliminate what it’s not before he MIGHT consider its LC.
I also for the first couple of years was going to multiple specialists and was told, it’s hormonal and/or anxiety. It was so frustrating and scary because I knew something was wrong! It wasn’t until a family member mentioned Covid, and to look into LC. So I did my own research through that I found this site and a couple of LC Clinics.
I went last December and the LC doctor said I did have Dysautonomia (POTS) “like” symptoms which he does believe was brought on by Covid. He said it has been a common disorder most people who had Covid are suffering from. He also said it being theorized that there could still be remnants of the virus still in some people causing symptoms, why?! They just don’t know yet.
So do I feel better symptoms wise, absolutely not, it did give some sort of comfort knowing I’m not imagining it all, a little.
It’s so many of us feeling lost, and left behind, it’s a struggle for me every single day! I grieve a life I no longer have.
I pray we all are healed, healthy and happy again!
Wishing all the best!

where would we send the video to?

@janeaddams @mbryant1380 Thank you for the support!
I appreciate it and am sorry to hear, from your accounts, that you also face the challenges I mention. As a medical professional, I resort to keeping myself well-informed through regular and high-quality scientific literature reading. However, despite this strategy to feel less hostage or victimized by the symptoms, time passes, and I do not perceive encouraging news for the medical scenario. Much has been researched, there are theories and trials, but nothing provides me with any assertive perspective on what my prognosis will be for the next month, the next year, or a lifetime. I feel that I've lost parts of myself, mutilated like a flower losing its petals one by one. This is the image I have of myself today – parts that have been mutilated in terms of potentials and experiences. With each recurrence, a new part is left behind, so I no longer feel like who I was, nor do I sense that I am becoming anything creative or positive in any aspect. I am struggling to comprehend the idea of almost invalidating myself due to terrible limits that fluctuate but systematically return. I appreciate this space and the courtesy of everyone. I hope that, as soon as possible, we won't need this channel anymore to vent part of the suffering, which seems to be of overwhelming loneliness, as even those closest to us lack the perception of what we are experiencing in terms of mourning for difficult losses of parts of ourselves that were dear to us.

To me, the hardest part of LC is the lack of recognition from doctors that it is real. I can understand it in the beginning. I got covid in March 2020 and the symptoms never went away although a few have improved. It really throws me that now, 4 years later, there are still doctors who say the symptoms are stress-related. This is after being diagnosed with POTS, orthostatic intolerance, PEM, ME/CFS, cognitive impairment as well as others. If my symptoms are all stress-related, those diagnoses (which were based on test results) are real or based on the doctor's stress? I have stopped grieving the life I used to have. I very much miss the brain I used to have. I am so thankful for my faith in Jesus Christ, and for my supportive husband. I am trying to focus on figuring out how to live a life that contains only about 4 hours of productive time a day. I think it's hard for doctors to be faced with such a pervasive illness that is all mystery at this point.

Jane - I do the same - stay up to date on peer-reviewed research. My frustration there, is that it mostly seems to be focused on proving its existence and the need for more research. Yes, we need research on how to treat it! I, too, feel like a different person. Every day I seem to face a new challenge from my cognitive impairment and it is frustrating. You are young - which makes it so much more difficult. I did notice, though, in your post, that you are a talented writer. I would encourage you to consider pursuing this. You might be the one to reach those that need to hear our stories - all similar but unique, all in need of answers, validation and encouragement.

I did not sense I was becoming anything creative until something interesting happened. My 30+ year old disabled daughter said she wanted to try painting. I told her I would try it too! I have NEVER painted outside of art class in high school. I tried to create a beautiful picture once for my mom (while in high school), and when she saw it, she asked, "What are you, 5?" So, at 63 I tried it. Viewing you tube tutorials showed me I knew NOTHING! I was anxious and terrified. I very quickly realized I am not an artist. However, I also realized I not only enjoyed it, my work wasn't horrible. I also took up crocheting again. Crocheting, which I've been doing since I was 10, pushed my brain to its limits. It takes me way longer with lots of re-dos and rip-outs. However, those two things have allowed me to fill that creative need I was missing since not being able to continue in my job. You are young and talented. Your creativity might not look the same as before, but it's there, waiting to be discovered.

@bettew The email address I found is lcdcmarch15@gmail.com ... the info I found is available at eventbrite.com.

Your post is so genuinely kind and thoughtful
Thanks
I really appreciate

in reply to @goldenbo @thaish1978 @mbryant1380
FYI a new support group has recently opened up ... "What Happened to Doctors?" ... and it's exploding with members' comments about suffering from LC and the disappointing search for help from the medical profession... not cheery but validating. People are calling out the all too common experiences many of us have had of being ignored, dismissed, and even worse in some cases... gaslit.