Nia | The Chronic Notebook

It still shocks me that people wake up everyday and just feel... healthy. No pain, no fatigue, no headache, no stomach ache, no joint pains just... a body floating through the day. As a chronically ill person I literally cannot imagine or remember what that feels like.

Me to myself at the doctor's: Ok smile but not much or you'll look too happy, stand up for yourself but not too hard or you'll seem rude, convey how bad this is but don't get emotional or they'll think it's in your head and don't use medical terms, they'll think you Googled it...

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@Parkyprakhar Yess that's so true as well

@chronicnotebook They need a proof of “why don’t you look miserable?” if you say you have a chronic thing

The idea that random people expect others to prove their illness or disability to them is ridiculous, because what do they want as proof exactly? Doctors letters? Discharge notes? Prescriptions? Receipts for medical devices? Pics of my puke? Like what qualifies in this criteria?

@jackyphei Yes I agree! ❤️

People towards the chronically ill and disabled be like: If you hide your symptoms we will doubt you, but if you show them we will call you hysterical. If you hide them we'll assume you're better but if you show them we'll assume you're attention seeking. Sound good?

It's hard when people act like those who endure long term illness should be grateful for the "resilience" that gave them. Nobody gave that to us. We had to develop it alongside trauma, grief, pain and exhaustion. It's ok to find it difficult to be grateful for that sometimes.

"But you wouldn't be who you are today if you'd never gotten your illness". You're right, I'd be someone who didn't need to psych themselves up to do basic tasks, someone who could make spontaneous plans, follow any career, feel energised. Strength is nice but health is better.

@SuperNurseRN Hahaha right like I can SEE it and by it I mean nothing so it must be true that you're healthy

Person 1: I sprained my ankle Them: Oh gosh. That sucks. Are you okay? You need to rest. Health comes first. Person 2: I have a chronic illness and I'm in pain all the time Them: But you look fine though?

@tatianamaryana ❤️❤️

@chronicnotebook 🙌🏻🙌🏻🙌🏻

There's a difference between being tired and fatigued. Between not wanting to do something and not being well enough. Between not working by choice and not working due to illness. Between being unreliable and living with an unpredictable illness. There is a difference.

@pausedME Thanks for sharing this with us. So so so truly happy for you 💜

5 1/2 years in bed. There is hope. For every single patient. Stay strong! #MECFS #SevereME #mecfsfighter

@rheumpatient I'm sorry ugh. People don't understand that while working is of course difficult, the purpose, social interaction, financial income and ability to follow passions and pursue interests that come with working and career are all benefits that those who can't work do not have

@chronicnotebook That's been said to me so many times. It's irritating. The other one I hear when I say I'm not employed is "I wish I could have retired at 30". It's alright if you have your health. Not so much fun otherwise.

Them: "It must be so nice to stay at home all day" What we're actually doing at home with a chronic illness: Lying down, staying in bed, feeling terrible, being too exhausted to do anything, to watch TV, to shower, to talk to anyone, to make meals, to move. So no. Not nice.

@katie_andME Oooof this poem was powerful "even my nightmares are an escape". Thank you for sharing it with us.

I’ve written a poem for #SevereMEawarenessday #SevereMEWeek2023 Next month I’ll have been bedbound for 3 years with #severeME #VerySevereME Here’s the link to the post on my blog. If you have capacity (although not all of us do) please give it a read katielivingwithme.blogspot.com/2023/08/severe…

@KkBonton I'm so sorry! Also why aren't patients allowed to say something they suspect? This is a two sided convo. Sure we could be wrong but then you could discuss that with us calmly. This just makes us feel like we gotta follow a script on how to describe how we feel.

@chronicnotebook A Doctor’s visit that will always stick with me was when I was about 17 and having reoccurring tonsillitis I told a dr they were ‘almost constantly painful, red and inflamed no matter what I do’ and I got yelled at for ‘giving a diagnosis when he asked for symptoms’ 🙄🙄

Fun story. I told a nurse I had heart related symptoms and she said "Who says so? A doctor? A cardiologist? Or are you a doctor yourself?" Because apparently you can't attempt to describe your symptoms without a doctor saying you have them at all. Medical gaslighting is fab.

@amethystbeeble 🥲🥲 that just makes no sense

@Nerdybird_hail The EXACT same thing happened with my and my neurologist. I just said I KNOW. Like my skin feels sensitive and it tingles and hurts to touch and burns. (I have eds and fibro and Migraines etc)

@BeaWonky Right? Like you're expecting me to have a diagnosis before I even come here. Sure I could be incorrect, maybe my HR is high for a non heart related reason but...I'm trying my best to communicate here and I can only use the words I have. 🥲

@chronicnotebook "I have this thing happening that only I can explain right now because it's in my body" "well first off you're wrong-" What??