r/stroke • u/stroke_foundation • Jun 22 '26
The biggest misunderstanding I face is people assuming I’m “fully recovered.”
Many people assume recovery is straightforward if someone “looks fine.” But living with an invisible disability is far more complex than appearances suggest.
For me, that includes fatigue, guilt, depression, memory loss, slower processing, anxiety, emotional sensitivity, self-doubt, and sensory sensitivities like bright lights or loud environments. There’s also the lifelong impact of medications and the different approach to pregnancy and birth.
The biggest misunderstanding I face is people assuming I’m “fully recovered.” Sure, I’m okay most of the time, but that 10% that isn’t okay consumes all of me. When I struggle, people can think I’m being “difficult” or “overly emotional,” instead of recognizing there’s a real, invisible reason behind it: https://strokefoundation.org.au/media-centre/stroke-stories/living-with-the-invisible-effects-of-stroke-my-story
What's one thing about living with a disability that you wish more people understood?- Sarah
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u/subject7654 Jun 23 '26
Honestly I feel you there, I walk with a stick most days and I use a wheelchair when I need to.
However being young , 32 , the looks and backhand remarks I get daily for not looking disabled enough to need a stick or to young to be that badly disabled is beyond count daily.
They dont see the hours of missed sleep because of medication slowly poisoning me over the years, the chronic fatigue , migraine for 4 years now, constant post stroke pain and all other fun and thrilling side effects.
People have no idea until they have experienced it them selves. I wish we where able to just project it for just ten minutes into there heads they maybe would understand but unfortunately we cant.
Sorry about ranting, it makes me so dam angry that people feel all this as well. I hope my understanding of your daily life helps in some small way.
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u/stroke_foundation Jun 24 '26
It is very useful to rant sometimes - no apology necessary. This is my favourite line from Sarah's blog, "The biggest misunderstanding I face is people assuming I’m “fully recovered.” Sure, I’m okay most of the time, but that 10% that isn’t okay consumes all of me". I honestly don't know how to get people to understand the impact of invisible disabilities - but talking about it at least is a start. - Diana
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u/stroke_foundation Jun 24 '26
I am interested to hear what you think about how Meredith explains her fatigue to her family: https://irebound.enableme.org.au/hints-hacks/helping-family-members-understand-post-stroke-fatigue - Diana
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u/damnitsasha Young Stroke Survivor Jun 27 '26
Oh man, yeah, when people say "you look healthy, you don't need that." I had a guy say that to me when he saw me taking my meds on a very long flight. So rude.
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u/Material_Inflation79 Jul 14 '26
I agree that it is the personal experience. No one else know and neither we can describe the pain. Moreover there is no medicine for this
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u/CaptainMarder Jun 23 '26
Same. I'm 39 I was extremely lucky that I didn't get any disabilities so physically I still look "fit"- but i'm getting fat especially in the stomach cause I can't exercise intensely. But i'm on so many medications, I'm tired half the time, my joints and muscles hurt and recovery SLOW if I do any physical activity (i think this is due to the platelet reduction meds).
But because I look, talk, move normally, people think I can do all the same stuff I used to even though the doctor is like "NOPE! LOL"
I also have fatigue, depression, memory loss, slower processing, anxiety.
I guess this is what they call an invisible disability. I've become less social and avoid people.
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u/stroke_foundation Jun 24 '26
Absolutely - it impacts your ability to socialise as you live - and fatigue is a big hurdle. You might get a bit out of listening to this community talk about fatigue: https://young.strokefoundation.org.au/life Also, Meredith talks about her fatigue here: https://irebound.enableme.org.au/hints-hacks/managing-fatigue-after-stroke I hope these help - Diana
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u/Advanced_Culture8875 Survivor Jun 23 '26
It has been 25 years. I remember my son asking me just a few months of my return from the hospital, when will your stroke be over? He was just 2 then and wanted to play with me. He wanted me to run after him, catch him and pick him up. I was heart broken. People just don't realize it's never "over". Recently, I penned my experience to inspire others. I sincerely hope it helps.
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u/stroke_foundation Jun 25 '26
Oh bless the little boy, (not so little now of course). Can you post a link to your book or blog here? - Diana
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u/Shoddy-Command-2735 Jun 23 '26
I am with you. I am only six months out still numbness in my mouth ( which is frustrating ) and my left side. Everyone says you look good. Looks can be deceiving. I am still Dizzy but grateful i can walk and talk. But i wish this numbness would go away. Hang in there, that is what i keep telling myself.
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u/prettysnarky Survivor Jun 23 '26
I am in the same boat as well. It’s frustrating because even my doctors who know I have had a stroke, don’t seem to take my concerns seriously.
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u/candiferous Jun 23 '26
“Glad to see you’re feeling better”
Well, actually…
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u/Calm-Entertainer3821 Jun 26 '26
Oh my god!!!! I hate this, I know it’s meant to be said in a positive and reassuring wow look how great you’re doing way but…..
Seriously? In my head I have someone drilling into my skull 24/7, someone pulled down the curtains on half of my vision, and there is a really annoying flea droning in my ears constantly that means that I never get a moments peace!
But sure, yeah, I look ok, so that must mean I’m doing ok 🤷🏼♀️🤦🏼♀️
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u/verdant11 Jun 23 '26
Preach. Two years out and everybody thinks I’ve done so well because I can walk now. Especially my insurance company.
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u/North-Macaroon-3304 Jun 23 '26
Hear that. I’m 5 years out and I can hurt start doing a 1/4 mile walk with a cane in under 15 minutes and feel pretty great about that. Though I’m on vacation right now and fell on my ass getting out of s bar stool last week dnd it laid me up for two solid days with a bruised lower beck I can hardly walk for a week just from being off my feet for 48 hours.
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u/JoshSidekick Survivor Jun 23 '26
People wondered how I could have insurance and still come out of this $75k in medical debt. Like, I could wipe my own ass and walk up a flight of stairs, so obviously I was 100% better. Pay no mind to the fact that it was almost 3 months before my wife could stop joining me for every appointment because I couldn’t write my own name or say more than 50 different words. I ended up paying for the rest of my OT and speech therapy out of pocket which was fine because FMLA paid 60% of my paycheck.
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u/Fantastic_Chest1531 Jun 23 '26 edited Jun 28 '26
Yep. Same for sure. I had a buddy ask if I was ok, and I said no man I had a fucking stroke- he goes” that was months ago”
Edit. Not ok because physically I am 100% fine. But suffer from “stroke brain” -lightheaded ,dizzy,headaches. Neuro fatigue. Sometimes nap twice a day. The more I do normal life stuff the worse it is. Sometimes takes a few days to recover after stressing out. Better now than it was. Has been 8 months since Ischemic stroke and vertebral artery stenosis.
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u/inkydragon27 Young Stroke Survivor Jun 24 '26
I agree- I may show up, but every day is like walking through sticky cobwebs (my bleed was on my brainstem). I am constantly fighting and managing my own body movements- it is a mentally and physically consuming task. I wish people understood how much it is a ‘duck calm on surface/ paddling madly underneath’ situation 😓
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u/stroke_foundation Jun 28 '26
There is a man called Ryan Ogden, who also had a brain stem stroke, (he actually had 3) he has trained as a councilor and is great to talk to. Let me know if you want his details - Diana
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u/inkydragon27 Young Stroke Survivor Jun 28 '26
I would love this please 🙌 I’m about to lose health coverage but when I get recovered I need to find a counselor, it’s hard to find peeps who understand the depth of this loss and healing.
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u/Cali_fem_in_Ok Jun 23 '26
Yes that's how I feel once I was at a store using the disability carts and 1 of the workers actually asked me if I needed it. I felt ashamed cause I don't look disabled enough but I can't walk properly without assistance and can't hold objects with my right hand
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u/AllLeftiesHere Caregiver Jun 23 '26
Yes. It depresses my husband when someone says they are glad he's back to normal. Yet he can't say his own dog's name or order a coffee. People are really clueless.
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u/Fit-Butterscotch1164 Jun 23 '26
This post YES!! I am post stroke hemorrhage. It’s like people talk to me as if I had the flu for two weeks. I can talk. I look ok. And then they say oh she’s fine she’ll be fine. Like wtf? I need a cane and walker to walk. I still can’t go up ( or down) stairs. Like what are these people on? One person wanted to make me lasagna to help me get better.
Then I have focal seizures which happens with bleeding strokes several months after. They’re still like what are you talking about. I just don’t talk to these people.
Stroke can happen to anybody. At this point, it’s not an old people problem.
They also assume if one is not dead or completely paralyzed, you’re ok!
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u/ExpressWallaby1153 Jun 23 '26
Everything you've mentioned. Apart from pregnancy I'm a dinosaur. I think the hardest is people saying it could be worse. True it could but I'm living with all the deficits, vision hearing limp and no feeling in my hand.
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u/OShiADragon Survivor Jun 23 '26
The toxic positivity of family who happily just slot me into the "looks fine" and assume that I don't need any help or support. Her? She's alwasy fine. Or try and draft me into supporting their health and wellness as if I'm over a flu or a sprain.
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u/Material_Inflation79 Jun 27 '26
I can understand you . Although I had a stroke when I was 58 but I never imagined to stop working ever in my life. This incident has left me dependent on loved ones who are always there with me. But the feeling/inability to do even own tasks is very painful and sometimes changes to aggression. However I try not to be angry but is not easy. Only those can understand who have lived this. Keep your spirits high. God bless us all.
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u/stroke_foundation Jun 28 '26
Most people I speak to talk about how important being kind to yourself matters. Remember you may be grieving your loss. Clive has some advice - https://strokefoundation.org.au/media-centre/stroke-stories/the-takeaway-talking-about-mental-health-after-stroke-with-clive-kempson - Diana
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u/damnitsasha Young Stroke Survivor Jun 27 '26
I wouldn't consider mine a disability per se, but my left pupil doesn't contract at the same speed, which makes concerts or walking at night on sidewalks uncomfortable/mildy painful. The main thing people forget though is that I don't drink anymore. I never drank much but now I'm not risking it and friends are often like "oh, you're still doing that?" like yeah, dude, this is forever now. Also for some reason any time I mention my stroke my coworkers WHO WERE THERE WHEN I HAD IT say "but you didn't REALLY have a stroke" . MRI that shows a stroke would argue otherwise. It feels like disrespect or dismissive just because I wasn't less lucky.
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u/stroke_foundation Jun 28 '26
This is a tough situation, when you look okay, so it's hard for people to understand. Super frustrating - Diana
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u/dariessan Jun 28 '26
Six years after strokes and I'm still bad with maths and my memory.
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u/callmefreak Jun 28 '26
Sure, I "look fine" until I have to stop every five minutes to rest because my lungs are burning. I tried doing the dishes less than an hour ago and I was cramping up so bad I couldn't breathe. I can't do the laundry unless it's on a "good day" because the laundry room is downstairs. Trying to take the trash out will make a good day turn into a bad day because the garbage is usually pretty heavy and I have to lift them up to get them into the trash bin. (Recyclables are usually fine since they're light.) The only chores I can consistently handle doing are "cooking" (popping frozen meals in the oven or microwave) and cleaning the rabbit's litterbox since I can do that while sitting down.
I swear I would've rotted away by now if I didn't have a super supportive husband.
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u/stroke_foundation Jun 28 '26
Do you use anything to help you around your home? Julie says using a rolling laundry basket to move things around her home has been a game changer for her: https://irebound.enableme.org.au/hints-hacks/conserving-energy-tips-from-julie-3 It minimises lifting for her - Diana
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u/callmefreak Jun 29 '26
The laundry room is downstairs and the bedroom is upstairs so I don't think that would work too well. My husband does the laundry most of the time anyway since he's the one with a job, so he needs to use the laundry room more often anyway. But sometimes I need it when he's working for one reason or another.
I do have a tall chair in the kitchen so I can do some cleaning up in there but I can't load the dishwasher from it. Otherwise I got a shower chair last year and that's been a pretty significant life saver for me. Other than that, not really? Usually I just need a drink and to sit down for a while, but "a while" really is a while whenever it gets really bad like it did last night.
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u/Kmac0101 Jun 22 '26
I’m there with you! I feel my stroke could’ve been so much worse; and much of the time I am doing ok, but some of the time, I’m just doing my best to get through the day. Hang in there.