Debra Barb
@RumpelSoulSkin · 4:04
What’s it like to live with an invisible health condition? May we not do it alone!
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So I'm really proud of the fact that all of these conversations and all of these battles that I faced are not only going to help me going into this school year and having a little more understanding about my needs and how difficult it is for me to be exposed to certain sense in some circumstances
Deborah Pardes
@DBPardes · 1:30
And I think that's where support groups are amazing, because you can go inside them and be yourself and really be raw and open and then outside that close, sacred circle, you can live a life according to how you want to live it. Yeah, some people live two or three lives in one day. It's quite amazing. But thank you for starting this. And I'll listen in carefully
Okay. I just listened to your swell about the invisible condition due to COVID with me. Swell really just depends. But but eating for me has always been a chore. Even though I eat a lot. It's just like a preconceived exercise in my subconscious. Like, okay, it's just things I've learned as a kid and as a teenager. I'm thinking probably just going to school. Okay, I got to pack my lunch
Swell Team
@Swell · 0:15
night time
@Nighttime · 3:15
Principals rarely have anything that they get in severe trouble for, but if you look like the child that's considered sped or has a disability, pretty much anyone, no matter who you are, what connections you have, you will lose your job or get a severe finer sanction. It's a big deal. So principals, in my opinion, or Admins, usually perk up and take care of something when there's a severe consequence for them. But there's no consequences for neglecting teachers
And the same goes for talking to people just in day to day life, that if you aren't acting miserable, if they don't see you with an aid or whatever, swell, then you can't possibly be experiencing what you claim to be experiencing. And then the flip side of it, though, is if you do talk about it, if you do talk about your struggles and how terrible it is, people don't want to hear that. They'll just drift away or disappear altogether
Debra Barb
@RumpelSoulSkin · 4:21
But there is a learning curve for people who don't have conditions like us, and if they don't intentionally do some work to be more informed and to be more educated and to be open to conversations like this, I think, unfortunately, they might just not ever be our people who can actually be supportive to us. So cheers to all of you who are staying strong in dealing with this invisible stuff, whether it is a brain condition or if it's something else going on in the body
Zara Lisbon
@ZLisbon · 5:00
Today it was not one of those days. It was fine. I even had a little bit of motivation to clean, which happens from time to time. The worst part is when I say I'm really tired and my husband or someone else like my mom or sister will say, like, that's okay. It's okay to be tired. Just be tired. And I feel like that's how I know. They don't understand what it feels like to be borderline crippling tired
Zara Lisbon
@ZLisbon · 0:57
Where no one can see my suffering because it's invisible. My sister, I think it's frustrating because I just want to help her. And she doesn't seem to want guidance with long term thing because I don't really blame her. It's like I don't want to hear anymore what I could do to have more energy. Because unless it's coming from a person who has chronic fatigue syndrome
Debra Barb
@RumpelSoulSkin · 3:08
So I only had to deal with really debilitating fatigue where I had to kind of ration the work that I could do for a day, just like you might also be about an hour at a time or sometimes a half an hour at a time. And even if that was simple things like just getting through emails, to have that level of struggle with energy mentally, and then beyond that, the physical debilitation for just a year for me was horrendous
Georgie Dee
@GeorgieDee · 4:53
However, my colleagues are amazing and they're very understanding. I think that it's taken me ten years for my family to understand my health condition. I feel like I had to keep telling them over and over again because it's invisible and they can't see your pain. And I just felt like I just kept repeating myself and no concessions were ever made. And my friends were better about it because you don't choose your family, right? You choose your friends
Chloe Kaminskas
@chlomonsta · 3:41
My condition with this brain fog because it severely inhibits my ability to be in the moment because I'm just kind of like thinking about like oh my God
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