BumblyBee

276d

Do you ever experience imposter syndrome-ish feelings when you bounce between good and bad days? I would call myself a mid-range POTS patient because I don't experience syncope (in those common scenarios I get migraine instead), but the impact of my symptoms can still be debilitating and humiliating most days. Whenever I have a particularly good day, I start to feel like I'm not pushing myself enough on my other days since I don't have POTS as bad as others/it's not as "visible" to able-bodied peers, or like I don't deserve to have or use things like mobility aids, etc. It would be nice to know I'm not the only one who struggles with this, as tough as it is to describe!

Postural Orthostatic Tachycardia Syndrome (POTS)

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  • liladyscarly

    276d

    I can’t say I’ve quite felt like this but I definitely feel like my life is passing me by. I try to get up and do basic things in the house- I’ll flare. I’ll rest and then I feel more okay. I sometimes just wonder if my life is going to consist of sitting in my room on my bed online lol. Feel free to dm me.

  • Meggo

    275d

    ^^ I feel the same as both of you. I’m 28 and used to have an awesome career and a great fun social life and my own home that I owned since I was 20. In the past year I’ve sold my home to buy one with my dad (split costs and so he can be there to help me), and I’m now stressed every day over work because my choices are push my body and hate everything… or stay home and risk getting fired before I find a fully remote position. I don’t have a social life because my good days are mainly drained from doctors apts and work - so I just stay in bed all day and night hoping my body will cooperate. On the rare days I get to spend good days with friends - people will see me out (and not see my disabilities or symptoms) and then get upset when I turn them down because of my body. To their credit, they try their best not to show it.. and they aren’t mad upset, just sad they still don’t get a chance to hang out too. I know it probably seems like I have more interest in other friendships and that probably hurts. But I have no idea how to explain it any better or make my body stop malfunctioning. I hate others feel this way too - but it’s comforting to know it’s not just me. Thank you for sharing - and you’re not alone! 🖤

    • liladyscarly

      275d

      this is so eloquent

  • davycrochet

    274d

    no fr!! i have one good day and my brain says “youve been faking it this whole time” also it doesnt help that im still working on getting officially diagnosed (tilt-table test isnt scheduled till fckn august!! how are they that busy!?) so it adds a whole other layer to the imposter syndrome

  • Lew_Bear

    274d

    Yes! I also get imposter syndrome when I use my mobility aids and constantly have to remind myself I’d only be able to be out of the house for less than an hour at a time without my wheelchair/walker because I get fatigued so much more quickly when I stand or walk

  • KitKat1450

    274d

    Yes… half the time I pretend like I’m fine so I can push thru so I feel like I’m doing enough and then I pay for it and realize I cannot “fake” functioning like a healthy person for long. It’s so frustrating. I don’t have much of a social life because my energy goes into taking care of myself and attempting to work and even that is rough. When I’m bad I don’t go out and I isolate so most people don’t see my struggle unless I pushed it and can’t mask it. So they think I just don’t want to be around them until they see me really rough. But really they don’t think it’s bad until they see me like that which I hate and I explain most of my days are like that and I usually only go out on good days unless I have an obligation. It’s hard for others to comprehend and myself to be able to do something that takes a lot one day and then next nearly pass out when getting out of bed. It’s like whiplash. What helps me deal with the imposter syndrome is stop hiding when it’s bad, set better boundaries so I don’t end up paying for it, and really take into account how much energy things will take and if it’s worth it and some days are better than others and I can only control it so much. Balance of that is really hard though. But when I’m not in a flare I completely forget and imposter syndrome gets worse so I try to ignore all my symptoms because I feel and “look” more functional and just happy to feel ok and get blindsided when symptoms come back full force. It’s so confusing and going to doctors are frustrating because I feel crazy like it was so bad before but now nothing is showing up so there must be nothing that wrong with me. When that happens I have to tell myself to remember I have flares and those are horrible and I’m not making it up. I feel like half the time I’m not bad enough to help but I also don’t want to make it worse to get help because I’m the one stuck with managing it. When I don’t manage it I end up in the hospital and I know that now. I think I have a tendency to gaslight my own symptoms because of that which is really not helpful and I’m working on and trying to accept this is how my body works and focus more on what I know I need to do to manage before it gets bad and remember it’s not always this bad or when it’s good if I don’t keep up with maintenance it’ll get worse real quick. Constantly changing… crazy-making. You aren’t alone.

    • PEMprincess

      244d

      replying to let you know that word for word this is me. I relate to each sentence and I catch a lot of shit from my support system for it😭😭 Thankful to have them validating my experience & kind of my “Girl take it easy you’re gonna push yourself too hard and become immobile” kind of guardian angels. We are fortunate but we are not imposters. Take your time, continue to learn the routine that works for you. I know I am. 💝 thanks for this!

      • KitKat1450

        244d

        thank you for your reply and I will take the advice to heart💕 I’m so grateful for what I do have and what I can manage and trying to turn that into my focus. And I’m glad that my sharing made you feel connected and felt the same for me knowing I’m not the alone though I don’t wish it on anyone💕🙏🏻

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