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bathroomroach

Updated 1y ago

Gaslighting Myself with an Invisible Disability

Question: People with an invisible, physical disability. Did you ever gaslight yourself before diagnosis? I'm currently experiencing tons and tons of symptoms, but now that I'm about to see someone who may be able to REALLY help me, I feel as though it's all fake and I'm just making it all up. Y'know? Like I never really feel refreshed. Ever. I kinda just tell myself I'm not getting enough sleep or I sleep too much. I sleep for 8-9 hours every night. My legs often feel 50 pounds each, but I tell myself I'm just lazy.

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bathroomroach

2y

Add: I mean, I got a heart monitor done for a week about two months ago. I'm seeing a Cardiologist (she is a POTS specialist) to discuss the possibility of me having POTS. I read over my test results from the heart monitor which day I'm fine, but I had a few second degree AV blocks and my highest bpm was 153. But I tell myself I'm fine and that it's normal for your heart to stop beating for a few seconds sometimes. Or that what I've got isn't enough to give me an answer, so therefore, I'm not sick. Did anyone else experience this?
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Lunarr

2y

Also, I'd like to mention that a normal heart monitor is typical for POTS/dysautonomia, which can be super frustrating! While they do have to do with the heart, its not inherently a heart based issue and is instead a dysfunction of the autonomic nervous system which is incredibly hard to quantify/look at. It effects the heart for sure and your high BPM and other issues show that even if the docs says your heart itself is fine. If you do have POTS or another form of dysautonomia, I'm sorry to say that you will most likely not recieve solid answers, even from a tilt table test, just know that isn't unusual due to how little doctors know about it. It can be very disheartening for sure
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katitomato

2y

I was so young when I was diagnosed that I didn’t understand my disorder, especially pre-diagnosis. And I was lucky enough that my mom worked in the medical field and identified it almost immediately. But I have gaslit myself into calling myself lazy when I really have chronic fatigue due to a combo of mental and physical illnesses. It’s really hard, but once you stop comparing yourself to others and start comparing yourself to yourself, you’ll feel much more liberated and confident in yourself. It’s okay to have a day where you do nothing but watch tv. It’s okay if you need to take a couple days off of work to recover from particularly bad symptoms. And you will (hopefully) feel much better after you are able to see a doctor and they will be able to explain what is going on with your body.
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Lunarr

2y

It sounds like you're experiencing internalized ableism, which haunts us all on occasion I think. "I'm exaggerating, it's not that bad, other people are sicker than me, other people are sicker than me and doing fine, etc". I still feel these things even four and a half years after my diagnosis and being repeatedly told by doctors that what I'm feeling is abnormal and doesn't make sense medically. Mostly I try to subconsciously downplay my symptoms, thinking they aren't that bad, but like,, then I'm reminded that healthy people don't have the needs that I do, you know?? Like I've long accepted that I can't be outside in the summer and I sometimes forget that isn't normal Basically what I'm saying is these feelings are normal. They're a product of society treating chronically and mentally ill people like garbage. It really doesn't help when your illness is invisible and there isn't any "proof" other than what you feel usually Be kind to yourself and chastise the voice in your head telling you these things like its a small child lol because you know better! You're not lazy or faking, you're sick, dang it! Just because it's chronic instead of temporary like a cold or flu doesn't lessen its impact on you. Try your best to keep this in mind and know that you're not alone in this sort of thing

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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