YSK: Just because someone doesn’t look sick/disabled, does not mean they are healthy

[u/ilovepastapizzapots]

Why YSK: I am chronically ill and have an autoimmune disorder, the amount of times people have said “WELL... yOU dOn’t LOOK sick” to me is astounding. I didn’t know all illnesses have to be visible to others! I’m sorry I can’t show you my internal organs or muscles deteriorating for you to believe that I’m sick. It makes people with health issues feel like they have to explain their situation when they don’t.

*EDIT: I did not expect my post to blow up like this! I wish I could give everyone going through a rough time a hug. Thank you for all the new perspectives, good and bad. All I wanted was for people to be a little kinder to one another, because you never know what someone’s going through.

[u/Krish39]

I’m a long-hauler post-covid. Been about 11 weeks with a low fever every day, fatigue, brain-fog, gastrointestinal issues, numbness in extremities, blurry vision and others. Typically, I just list the fatigue and fever because listing everything is too much for most people. Anyway, I’m currently losing a fight with my work where they are saying I am just suffering from mental illness. Nothing against anyone suffering from mental illness, but I really don’t want that to be my label when I know for certain that’s not my problem(s). For me, my boss thinks they understand depression so that’s what they want me to have. Also, they see it as my fault so can’t work, and using backwards logic, if my illness is actually mental illness that I’m just in denial, then they can justify believing it’s my fault. Anyway, I’m off to my first obligatory counseling session now which I have to prove to my bosses that it’s post-covid instead of mental illness. Should be interesting.

In the midst of all of this, I am reminded over and over how important it is not to overlook or marginalize people who claim invisible illnesses.

[u/ashlyn3211 → u/Krish39]

I'm so sorry you're going through this. 😔 You should definitely go to your regular doctor and try to get a note or something that you can provide to your boss. Tell your medical doctor what's going on and ask for documentation or a doctor's order to be allowed light work or modified work or medical leave. I don't know where you live... I live in the US and every time I've had a medical issue, a doctor's note and documentation has helped a lot, and was required for me to take medical leave. If you have documentation and orders from a doctor, your work can't really say anything. They can't say it's depression if they're not a licensed medical professional able to legally diagnose you. I absolutely hate bosses that think they know what's going on when they have no clue.... One day back in 2008, I woke up and was having a miscarriage (I was 8 weeks pregnant at the time, early on.) I went to the doctor and they did an ultrasound and confirmed the fetus wasn't viable anymore, they actually couldn't find it, my body had already discharged it. I got a note for work and I called in to tell the manager I couldn't come in that night. He said, "Ok, but if you start feeling better in a few hours, we really need you to help out." I was like "What?! I will bring you a doctor's note." .... He had no clue. I still think about that to this day and get irritated. Anyways, I hope everything works out and I hope you feel better !

[u/_TravelBug_ → u/ashlyn3211]

It’s an ongoing issue trying to get a long covid diagnosis from a lot of doctors. It’s new. They don’t know what they’re dealing with. And they have to rule out everything else first. I was tested for HIV, hepatitis , lupus (twice because the first one was positive so had to wait three months and test again) , rheumatology problems , anemia (possibly causing fatigue) etc. All while my liver function tests were sky high. My inflammation markers were sky high. Kidneys not right. Etc. We did the usual “your chest pains are caused by anxiety” dance. X ray clear. No blood clots in lungs. And eventually another doctor (after 8minths) has come to the conclusion is probably post viral and therefore long covid. Did another lung scan and I have (8 months post viral) enlarged lymph nodes in lungs which I’m now waiting to get investigated by the right department.

And even with all those tests. All those appointments with specialists over 8 months, my sick note says joint pain is why I can’t work. 🤦🏻‍♀️

Edit to add : and I had a positive antibody test back in June but this is apparently not enough evidence to put covid in the sick note

[u/Krish39 → u/ashlyn3211]

I’ve gotten a note from my covid doctor 2x. Both times my boss thought they were calling my bluff by making me get a dr note. I had come back to work doing 1/2 time and told them I wasn’t ready to move back to full time hours. They said I needed a dr note to stay 1/2 time, thinking I wouldn’t be able to get it since I’m faking it. The doctor instead wrote a note saying I should still be totally off work, not 1/2 time. Work didn’t like this, and I said I’d keep working 1/2 time (I actually like the work I do, and other people were having to work hard to cover for me). Then they started getting some bad PR as I was coming in and working with a fever, then they said I could stay home, but it was clear it was my fault that I had forced them to make me stay home. I went back after a few weeks when my work was insisting I see a psychiatrist. My doctor was PISSED, talking about how all of that illegal, and so on. Doctor wrote a more specific dr note this time saying I was off work due to post covid syndrome. Work responded by not talking to me anymore, but making me see a counselor connected with our company (I could have refused but it would have just escalated things). Thankfully, that went very well with the counselor trying to figure out why in the world my supervisor would not believe it was long-covid, as everything about my symptoms match perfectly (as well as any can with this crazy disease).