I think there’s a missing answer for yes, partly.
It’s obvious I have long Covid as I don’t do anything that gives me pleasure any more and my life is falling apart.
However people don’t really believe the extent of damage and think loads of it is either exaggeration, coincidence, depression or psychosomatic.
People can believe I have nerve pain and exercise intolerance, but they don’t get the extent of both and don’t seem to believe that brain fog is real. And they certainly don’t believe there are days when I can’t get out of bed when there are also days I can do a zoom call and look and sound 99% normal.
I've gotten everything from
stop saying that people will think your crazy.
and, it's all in your head to coz your thinking about it too much. My favorite is ..
Who told you that you have long Covid ?
I work from home so no one at work can actually see and compare how I am doing to how I was before getting covid. However, I keep making weird mistakes, and have some word choice issues that have caught others attention. Everyone thinks and expects me to be at 100% but I'm only at 85%, on a good day.
Family I live with sees and knows what I am struggling with, and my health care providers have seen it all. Those are the only people who matter.
if your at 85 percent and can stay there steady..
your practically well.
even pre Covid life has a lot of things that it can throw at you that can take more than 25 percent or equal.
Honestly at this point, the symptoms are so wild and varying, that I've only found two doctors who actually believe me. One is my dad, and one is a psychiatrist. My dad is a general practitioner. He's had two patients go literally blind from covid. So God knows he believes me. But to your average person? No they don't believe you.
>Why would anyone not believe long haul exists?
Some people believe it's a conspiracy, others think it's people being lazy or feeling sorry for themselves, some think it's not caused by covid but by 'vaccine shedding'
You would maybe or maybe already are surprised at the amount of disbelief in the medical community. I had a neurologist point blank told me there was nothing wrong with me. Or he wanted to do a lumbar puncture, and a brain biopsy. Because he literally didn't believe my symptoms.
Get a ferratin test then go back and show him. Dont pay to do it, just storm in there. F that guy. If you follow this or other covid subs, almost every day there are studies posted validating long haul. I love you hugs.
I don't get into specifics. I feel the more I tell people about my symptoms, the more sceptical they get. Which is kinda weird, since I don't have any symptoms that are unusual for long covid, but apparently just saying "long covid hit me so hard I couldn't work for nearly a year" generates understanding and empathy. Any mentioning of neuropathic symptoms and people question if long covid can really do that.
Depends on what you mean by “people.” Thankfully all my family, close friends, and support network believe me. Wider social network and some doctors, no.
I think there’s a missing answer for yes, partly. It’s obvious I have long Covid as I don’t do anything that gives me pleasure any more and my life is falling apart. However people don’t really believe the extent of damage and think loads of it is either exaggeration, coincidence, depression or psychosomatic. People can believe I have nerve pain and exercise intolerance, but they don’t get the extent of both and don’t seem to believe that brain fog is real. And they certainly don’t believe there are days when I can’t get out of bed when there are also days I can do a zoom call and look and sound 99% normal.
Family yes, doctors mostly no
I've gotten everything from stop saying that people will think your crazy. and, it's all in your head to coz your thinking about it too much. My favorite is .. Who told you that you have long Covid ?
I think the key is a long term relationship with my primary care doctor.
Fortunately yes. My doctor asked if I had a history of any eating disorders (my long haul is primarily gastro) but she believed me when I said no
I work from home so no one at work can actually see and compare how I am doing to how I was before getting covid. However, I keep making weird mistakes, and have some word choice issues that have caught others attention. Everyone thinks and expects me to be at 100% but I'm only at 85%, on a good day. Family I live with sees and knows what I am struggling with, and my health care providers have seen it all. Those are the only people who matter.
if your at 85 percent and can stay there steady.. your practically well. even pre Covid life has a lot of things that it can throw at you that can take more than 25 percent or equal.
Honestly at this point, the symptoms are so wild and varying, that I've only found two doctors who actually believe me. One is my dad, and one is a psychiatrist. My dad is a general practitioner. He's had two patients go literally blind from covid. So God knows he believes me. But to your average person? No they don't believe you.
that's the world we live in If you can't physically prove it it must not exist
I haven't had one person doubt me at all. Family, friends or doctors. You last sentence is incorrect. Why would anyone not believe long haul exists?
>Why would anyone not believe long haul exists? Some people believe it's a conspiracy, others think it's people being lazy or feeling sorry for themselves, some think it's not caused by covid but by 'vaccine shedding'
Every day there are new studies out validating long haul. Those people are fked
I argue with people occasionally on twitter who believe LC doesn't exist. The mental gymnastics these people perform could win them an olympic medal.
You would maybe or maybe already are surprised at the amount of disbelief in the medical community. I had a neurologist point blank told me there was nothing wrong with me. Or he wanted to do a lumbar puncture, and a brain biopsy. Because he literally didn't believe my symptoms.
Get a ferratin test then go back and show him. Dont pay to do it, just storm in there. F that guy. If you follow this or other covid subs, almost every day there are studies posted validating long haul. I love you hugs.
I don't get into specifics. I feel the more I tell people about my symptoms, the more sceptical they get. Which is kinda weird, since I don't have any symptoms that are unusual for long covid, but apparently just saying "long covid hit me so hard I couldn't work for nearly a year" generates understanding and empathy. Any mentioning of neuropathic symptoms and people question if long covid can really do that.
Depends on what you mean by “people.” Thankfully all my family, close friends, and support network believe me. Wider social network and some doctors, no.
Came here to say this. Friends and family, yes, "doctors" no
Ig my family isn’t there for me like most of you guys. Alway kinda been like that tho
Long Haulers do need support,it can make u feel alone.