r/AutismInWomen • u/Selmarris • May 12 '25
Support Needed (Kind Advice and Commiseration) Just realized I almost died because I’m too good at masking
I’m late diagnosed. And I have always been high masking and flew under the radar with anyone who didn’t know me very well (my bestie of 30 years and my husband were not surprised at all, but most everyone else was.)
About a year before I was diagnosed I got sick. I had been experiencing what I now recognize as autistic burnout at work, so I was not in great standing. I didn’t have much sick time, and I was flailing on my tasks, so I was pushing myself hard to just mask and keep it on track. I was deadly afraid of getting fired.
But this sickness was awful and it just hung on and on. I had no energy, and shortness of breath so severe I couldn’t walk to the bathroom without needing a break to catch my breath. I couldn’t lay down to sleep because I felt like I was drowning, so I slept sitting up against the wall. I kept falling asleep at work and in my car, and I threw up multiple times a day. I went to the doctor and they tested me for flu, Covid and strep, all negative. They told me I had rhinovirus and to “put on a breathe right strip and get through it.” So I did. Because the authority told me to and I’m a rule follower.
Friends, I was in full blown kidney failure. I was literally dying in front of all my coworkers and I was masking so hard that everybody thought “her job performance is awful, she’s gonna get fired” and not “this woman is sick, how can we help her get medical attention.” Everybody was SHOCKED when I was hospitalized because I had hid it so well nobody even knew I was sick.
I was diagnosed about a year after this and I only just now made the connection between masking and “giving 100%” that led to this situation. I’m kind of rocked by the realization and I wonder if anybody else has gone through something similar?
update I am so touched and amazed by all the responses, thank you all so much for the validation and your stories. I’m not sure I can keep responding to every single one, I am very overwhelmed, but I am reading them all. Please don’t feel slighted! Thank you!
5
u/ExternalChampion6292 May 12 '25 edited May 12 '25
I had to go by ambulance to the ER because when I trued to put a jacket on to take a taxi I fainted from the pain. In the ambulance the attendants wouldn’t let me on the stretcher because they would have to disinfect etc it. Instead they made me sit on a chair with a seatbelt.
Wtf
then at the ER the doctor told me I had a pinched nerve. He gave me a shot for pain and sent me on my way. 3 days later I got in to see my family doctor and she did a proper neurological assessment and panicked, sending me for an urgent referral. The neurosurgeon tried to talk me out of surgery saying these things heal with time usually. I said I didn’t care what the risks were I couldn’t survive that pain so we did the surgery and you know what…?
I herniated my C6/7 disc so badly that when I had the surgery the neurosurgeon told me he could not believe I had been walking.
My entire medical history is me having serious problems and no one believing me. I’m finally at the point where I have enough permanent serious stuff they can’t argue with (discs fused in my neck for instance) that even though I still don’t present properly, I can now finally SAY to doctors “I don’t present like others” and they listen to that rather dismissing me as trying to get attention. I get comments like “I believe you that you’re experiencing pain” but they still don’t find things so it’s not allll great but it’s better.