I'm there with you! I am lucky enough that I didn't have to fight too hard to get a long-COVID diagnosis once I finally decided to ask (a couple years in - I am 6 years out now). However, the past few years I have felt that my primary doctors I have had do not understand what long-COVID is and have no interest in trying to understand the latest treatments being tried.

I am so tired of doctors' responses being more tests - as if long-COVID is not a valid answer to my symptoms. You're tired? Oh ok, let's test your thyroid, do a sleep apnea study, do a blood count, etc. You say you are short of breathe? You may have asthma - have you used your inhaler? (newsflash - having SOB has nothing to do with airway constriction or inflammation, it means you are not getting enough oxygen in your cells) Struggling with fatigue? You need to work up to doing more exercise. (I have literally hiked up mountains several times while having long-COVID, not to mention many studies have disproven that more exercise is better in patients with chronic fatigue and post-exertional malaise, and rather that pacing is a much better recommendation).

I also have post-mono (which I got 3 yrs into long-COVID), and was fighting with my medical team today to get an EBV panel to see if EBV/mono virus was reactivated because I am having a flare-up of those symptoms. Despite going up the chain and my best arguing logic, they wouldn't do it. When I described my worsened fatigue, stiff neck, and nausea, which I explained I only have been having off and on since mono and at no other point in my life, they said, "you should be seen for that", completely discounting that post-mono on top of long-COVID could possibly be the cause of my symptoms.

My best advice is to know when working within (and fighting with) the modern medical system is worth it, and when to just take a step back for all the appointments, struggles, etc. and self treat with rest, any supplements that you think may help, looking for advice here, etc., and just say "screw it" to all the docs and nurses who mean well and have tough jobs, but at the end of the day cannot be bothered to understand what we are going through.

And if you do decide to engage in the medical world, give yourself extra time and space when you have appointments - don't make many other plans that week, have a friend drive you, etc, be prepared with someone you can call to vent to afterwards, etc.

Hang in there folks and keep on believing in yourself. You are the best expert on your own health and what your body is going for, and that's credibility to stand on when advocating for your own needs.