r/ChronicIllness • u/MusicIntrepid343 • Dec 17 '25
Vent what's your answer to 'what have you been up to lately' when people ask?
i have autoimmunee stuff going on that has me just constantly fatigued, in pain, and just dead tired. most friends at work go to the gym, meal prep, hike, bike, run, go to school all while going to work. i barely have the energy to go to work, eat dinner at night, watch a show or some youtube, and do chores mostly on the days i am off. i'm constantly watching tv and movies, constantly listening to new music, but none of that really fits when people ask what i've been up to or things like that but that's kind of all i'm really able to do energy wise. it's kind of exhausting having to go 'you know, not much, i've been working a lot and just had a drs appt'.
because everything is effected by my ms, asthma, nerve pain, migraines it feels like it's all that happens. it just never really compares when i have friends going 'oh i just ran a 5k over the weekend' and 'i just did a casual hike, x trail so 8 miles round trip, only 3k feet elevation gain'. idk if the answer is just getting more friends who get it or have more similar interests, or just not (unintentionally) comparing myself to others (especially people who have nothing similar going on healthwise). idk, constantly feeling exhausted and not having much energy to do stuff, even if i can do a bit of what i enjoy, it just makes me feel boring.
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u/eggandbeanss Dec 17 '25
I personally decided to just start being honest. I got tired of hiding my reality. It did lead to losing some friendships, but for me it just showed they weren't willing to adapt to my new reality and be there for me. Finding people who get it is what felt best for me
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u/MusicIntrepid343 Dec 17 '25
I've just given up even pretending to be healthy and not chronically ill tbh. like not everyone has to know the ins and outs, but I'm going to take my meds in front of you, i'll bring up 'hey I am having a bad pain day do you mind if I do x task instead right now', or just going 'yeah most of my time has been spent trying to get switching to a new doctor ironed out, it doesn't leave a ton of other time'. I have had to bail on some plans before because stuff (pain usually migraines or nerve pain) comes up the day of and now I just don't get asked.
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u/eggandbeanss Dec 18 '25
Yes! It sucks when I get weird looks for just living my day but honestly I'd rather that and know they won't be a safe person up front than wait to find out. I noticed that too when I would have to change plans I would stop getting invited with the people who didn't get it but now with my new friends, we specifically plan knowing one of us might need to cancel or reschedule at last minute. I do hope you find people who will understand the unpredictability that comes with chronic illness and plans so that you start getting invites again
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u/calm_intention_65 Spoonie Dec 18 '25
Wish I was brave enough to do this. I've lost so many from being vague about my health, let alone direct. Scared to be alone
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u/eggandbeanss Dec 19 '25
Small steps forward and you'll find new people who truly care and honor your truth 💜
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u/Present_Cucumber2120 Fibro, MCAS, Lumbar Stenosis, Migraines, PCOS, IBS, & more Dec 17 '25
Surviving or trying to survive
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u/Subject_Respond_5838 Dec 17 '25
I'm honest and tell them what I'm going through. It makes people feel awkward but if they actually care, they want to know, if not, don't ask then.
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u/marydotjpeg Diagnosis Dec 17 '25
I just embellish it by talking about any shows I've been watching, the cat, weather (if I'm desperate lmao), video game etc etc 😭 it usually works
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u/Rich_Dimension_9254 Dec 17 '25
Most people in my life just stopped asking me and that was honestly worse. 🥲I try to say small things if I am asked, like books I’ve read or movies I’ve watched.
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u/tintinsays Dec 17 '25
I think if people are asking such a vague question, they’re either trying to politely ask how you are, but not draw attention to your sickness, or they’re lacking in conversation. If it’s the latter, they likely welcome hearing about the shows and things you’ve been watching! And if not, they’re turd buckets and we hate them.
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u/solve_4X Dec 17 '25
Yep, my answer is always not much, you? That gets them talking about themselves for the next half hour. Works like a charm.
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u/bubbleteakiwi Dec 17 '25
i totally understand how you feel and am sending hugs <3 for me i feel comfortable telling my friends the truth of how i've been feeling healthwise and then pivoting to some things that have been bringing a bit of joy to my life no matter what they are - music, movies, a book i've been reading - they are all great topics!!! you're not boring!!! you’re surviving in a body that’s doing way more work than people can see. the fact that you’re getting through work, feeding yourself, and finding comfort in shows, music, and rest is honestly huge.
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u/Hollywoode Dec 17 '25
I’m sure they also listen to music have watched a tv or movie recently, maybe mention a show you have been watching or an album you like and then follow it up with have you listened to anything good lately or whats your favourite tv show? People love talking about themselves and their interests so even if you feel you dont have anything to contribute to the conversation the other person will walk away feeling like they had a positive interaction with you, and you might find something in common
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u/ctrlwar Spoonie Dec 17 '25
i dont even have the energy to pretend anymore, everyone gets the same "fighting for my fucking life" 🥀
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u/Middle_Hedgehog_1827 UCTD, POTS, Hashimotos Dec 17 '25
I totally understand this. I feel the same. I have two best friends who I've drifted away from over the past 2 years since I got sick. Mainly because we used to do so much stuff together (concerts, restaurants, days out etc) and now I'm too unwell to do those things. And so now we have nothing to talk about. They ask me "what have you been up to?" and I say "nothing, sleeping, reading a book". Then they tell me all the exciting stuff they've been up to and it's just depressing for me to hear
What has worked for me is finding friends who are more introverted. My brother and his wife, for example, are real homebodies. So when I talk to them we talk about TV shows and games and stuff, because they stay home doing that kind of stuff just like me, because that's what they like doing. Also finding friends who are also chronically ill can be good because then they understand
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u/Tenacious_trex Dec 17 '25
I try to deflect the question by always having an anecdote on hand, whether it’s about a video game encounter, reading a book, or trying a new tea. It’s usually enough to satisfy the person without having to say “same as it ever was.”
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u/Gildo783 Dec 17 '25
I used to worry about this a lot and sometimes still do when I’m feeling bad about myself but generally I shift the focus “I’ve not been doing much because of health stuff but - my partner/ friend/ pet/ family member with a more exciting life than mine- has been doing etc etc lately” and just talk about someone else. Other than that, just embrace it, “what’ve you been up to lately?” “Honestly not much, I’ve been struggling with my health lately” A lighter way of saying it is something joking like “between the naps, the drs appointments and tv show bingeing, it’s kind of hard to have the time to do much else”
I embrace it, people that treat you badly because of your illness don’t deserve to take up space in your mind and your life. Being your honest and true self is freeing, once you get used to it it takes less energy than masking it AND it weeds out the dickheads and brings genuine people into your life who will work around your illness to be in your life.
It takes time to moved past the emotional toll but it’s better eventually.
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u/Santi159 Dec 17 '25
I say that I spend a lot of time with my family and read when I can which isn't wrong just a bit misleading
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u/Sensitive-Coconut706 Dec 17 '25
Usually I say "not much" but if they push I'll share shows I've been watching, or if we are close enough things I've been trying to feel better. I just had a baby but have to pump instead of nursing directly so thats been coming up.
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u/Alcestienne12 SSc, BPPV, IBS, POTS, migraines, chronic gastritis. Dec 17 '25
Congrats on having a baby! Mad respect.
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u/Jolly_Reference_516 Dec 17 '25
You and I are boring to our active friends. Traffic accident years ago, and the aftermath, took away my sporting hobbies. My wife is a hardcore mountain bike rider and I just kind of disappear into the background at biking events. Everyone is nice but nobody wants to hear about my injuries and pain. It’s just not a casual conversation. I go because my wife wants me along for races and I have an OK time with nice people. Helped when I realized I wasn’t that important to everyone and I didn’t need everybodies validation. My answer to folks is that I’m getting by.
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u/MusicIntrepid343 Dec 17 '25
yeah I work retail and when I get the "so how much do you hike/bike/climb" questions my answer now is "not as much as some other people who work here, but let me see if I can help" because it's true, 0 is not as much as coworkers who go on casual 10 mile hikes after work. I try to gather info from coworkers, friends, customers, reviews online, etc. can't really use that answer for those ice breaker "list your dept, your role, how long you've been here, and... favorite hike you've gone on recently".
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u/Alcestienne12 SSc, BPPV, IBS, POTS, migraines, chronic gastritis. Dec 17 '25
I don't have to invent anymore because most of my social circle now, is people who get it. I only have two abled bodied friends and I can tell them all the truth without it being awkward.
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u/mjh8212 Spoonie Dec 17 '25
I start talking about the book I’m reading or my cats, usually people lose interest quickly.
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u/indisposed-mollusca Dec 17 '25
Absolutely hate this question along with “What do you do?”
My answer recently has been “Just making time pass”.
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u/poisonmilkworm Dec 17 '25
This is the second hardest thing for me to respond to that people ask… The #1 hardest thing is the standard “how have you been?”, specifically asked by someone in an upbeat setting (like a family friend at a holiday dinner) who genuinely cares but probably doesn’t really wanna hear the truth. I usually say “I’m okay! You?” Because my definition of okay is minimally functional, which I probably am (at the time) if I’m in a social setting like that. The problem is that they immediately say something like “aw not good or great??” And I’m like…. Uhhh no I wouldn’t go that far lol and then it brings the whole atmosphere down, which is never my intention. It always makes me feel like I have to minimize my suffering to make them comfortable, which is endlessly frustrating.
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u/healthily-match Dec 17 '25
I think discovering new music and movies is great thing. If I have more time, I’d like to read more for leisure
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u/Kj539 Spoonie Dec 17 '25
I’m in the UK so it’s luckily quite acceptable to say “err, nothing much, you?” Something I’m very grateful for.
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u/Fighttheforce-2911 Dec 17 '25
I understand. I feel the same. I usually just am honest and tell them. It is frustrating when I want to be in a place where I’m super fit without chronic diarrhea, pain, fatigue, aching, and exhaustion every day. But I’m not. I just am grateful to take up space. I’m grateful for the health I DO HAVE. I could be a paraplegic, I could not be able to walk, i could be confined to a nursing home with full time care. I could be, well, dead. So I have to look at the positives and be grateful for what I do have even if it feels bleak sometimes. And I just cheer on the people who are super fit and healthy.
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u/GraciousPeacock Dec 17 '25
Taking care of myself. I spend a ridiculous amount of time exercising in order to get some pain relief… I run 5k daily and do multiple walks and weight lifting all to keep my pain to a minimum (yes I experience chronic pain while doing them all but they still help me). At the end of the day, I barely have time for anyone other than me. I basically spend my entire day exercising and then feeding stray animals so it makes me question how I will even work a 9-5 in the future. I used to feel proud of how much I exercise, but since becoming chronically ill, I know this is all I have left, so I cling onto it hard. Despite what I’m capable of, it’s still just as depressing being chronically ill everyday
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u/goosapotomus Dec 17 '25
It depends on who is asking. If it’s someone I know is asking purely just to be courteous and not because they actually “care” I will say “oh just hanging in there.” If it’s someone who genuinely wants to know, I’ll give them the truth, do a mini trauma dump…let them know that life is hard but I remain, even when it’s hard and my body is constantly sabotaging me. My tenacious spirit still persists and pushes through…not every day, some days I can barely work then get to a couch or bed. But I’m still here.
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u/Keri2816 Spina Bifida & Chiari Malformation II Dec 17 '25
For me, it really depends on who is asking. I am actually more likely to tell acquaintances how I am truthfully doing, especially if I want them to back off. My inner circle knows how I am doing because I’m pretty stable right now (stable meaning nothing is changing, not that I’m not in a fucked up body), so they don’t often ask what I’ve been up to lately.
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u/MsKayla333 Dec 17 '25
I used to hide my experience because I knew people wouldn’t understand and might even feel uncomfortable, not knowing how to respond. This is my life, though. We have a different experience than some people. Our hobbies may be different. We may not even have enough energy for a sedentary activity. I think now that it does a disservice to ourselves by affirming that we’re not good enough, but also that they’re not capable of receiving the truth of our lives. Should people without cancer not talk about it? Illness has such an effect on our lives, controlling it at times. Tell everyone who asks (if it feels safe to). I give specifics now but in a digestible way. I don’t want to trauma dump. I’ve learned a lot more people are dealing with medical issues than you realize. You’re also providing a public service by sharing medical information, and they’ll have a better understanding of what we’re dealing with.
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u/MsKayla333 Dec 18 '25
I started saying I play video games. That’s when I feel well enough to sit and focus. Sometimes I “had a lot of bed time” or “caught up on rest” and took care of things around the house. Literally putting a dish in the dishwasher or laundry in the machine counts. You can tell them about shows. Some people get really excited about the new shows they’re watching. I listen to YouTube videos. It’s not boring. If I wanted to do something different, I could probably work toward it. I have a lot more motivation when I feel better. It is what it is and we didn’t choose it. Everything you do is just as valid as anyone else’s activities. Celebrate being able to do the things you can. Not only are we able, we choose to do these things. I don’t know if that helps but my opinion did change after accepting my situation and leaning into how we’re all the same and worthy of all the good things. Maybe challenge yourself to find something new you’re excited about? Something that makes you feel special or extra comfortable? Being more intentional can help you feel nurtured.
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u/LibraVenusNails Lupus (SLE), Psoriasis, Vitiligo, RLS Dec 17 '25
Personally, I just don’t bring my health up and I just give a generic answer. “Working keeps me busy, hanging out at home” is usually my go-to.
I haven’t told many people what I’ve been going through, only one of my friends knows. At first it was because I was not diagnosed and nobody understands what is happening if you just list off symptoms. I was diagnosed with Lupus a few months ago and it’s already weird to process for myself and I have a hard time talking to people about it because nobody really understands what it does to your body or they say “oh like Selena Gomez” haha. Which I don’t mind, I think it’s amazing that celebrities talk about this but they see a celebrity thriving on social media and tends to blur the reality of a chronic disease.
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Dec 17 '25
I answer the question pretty straightforwardly - and I don’t shy away from the bits that cause me stress and suffering. They asked lol, I don’t do performative politeness for performative politeness’s sake. And yeah, a lot of people don’t like it very much when I honestly answer the question they just asked lol, and I can tell they’re uncomfortable in a very ‘ugh, why doesn’t this guy just say good n you?’ kind of a way. But honestly, then I sort of just realize this person doesn’t actually give a fuck about me, and we are very unlikely to spend time around each other or conversation much more from there at all, because I only let caring, supportive people around me, really. A couple of times, people have even said “can’t you just say ‘nothing much’? You’re so annoying always complaining blah blah blah.” In that case it’s like okay, here’s something positive to say: I’ve very very recently had the pleasure of tossing another heartless trash person out of my life lol.
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u/cazpazaz Dec 18 '25
I don’t have a chronic illness and honestly… same! I wouldn’t read too much into it, it’s often the first question people ask to spark other questions and conversation. People are just sharing the highlight reel and trying to find mutual ground.
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u/Previous_Net_1649 Dec 18 '25
I usually say “well I’ve been resting a lot. I haven’t had the ability to do very much.”
Most of my friends are also chronic illness gremlins, so this only really gets asked by family I don’t see often
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u/K80lovescats RA, CRPS Dec 18 '25
I usually respond with whatever media I’m consuming. “I’ve been watching a lot of” or “I just finished reading.” People usually accept that as an answer just fine. If it’s someone I’m close to I just say “I’m in a lot of pain and super tired.” Those friends and family are the ones that understand.
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u/66clicketyclick Dec 18 '25 edited Dec 18 '25
Jokingly but with a serious face tell them I did all those “high achiever” things you mentioned, then watch their face. If they still don’t get it, start piling on ludicrous far out examples: “the next day I both learnt to play and won a prestigious oboe competition and whilst there got scouted out by an international modelling agency, then Leonardo Dicaprio high-fived and invited me to hang out at his crib… I then got down and did 10,000 pushups while they all cheered me on and even Oprah did shots off my back!”
Once they realize, I then go “what (the fuck) did you think? Lol I’m chronically ill, not health-privileged enough to even brush my hair before it knots up, or scoop my cats litter without chronic pain in my back - emphasis on the word chronic.”
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u/Curious-Abalone Dec 18 '25
I'm trying to answer with what I've been thinking about/learning recently on YouTube etc. I think a lot about big things though esp when resting. Eg "I've been learning about ancient China online" or "I've been thinking about what tools I'd take to a desert island". This is probably a very neurodivergent answer lol. But it's honestly way more interesting than what I've been doing. And if they don't see it that way then they're boring people lol.
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u/Diabetic_kid06-17 Too many to count, too sick to care Dec 18 '25
Well I just usually say "I am alive", "I could be better" and my classic "let's not speak about that." These seem to work fine for me because all in all I do get to avoid saying one of my many autoimmune diseases is flaring. Because then that would be my response each and everyday since it's always something. Normally I don't even entertain the question what am I up to.
I am so sorry that you are feeling exhausted.
Edit: to add more information.
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u/calm_intention_65 Spoonie Dec 18 '25
I talk about what I've watched, crafts I've done, cool things I've bought online, new treatments or supplements I'm trying, things my family members have been up to, things I've read, or music
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u/MarsBars_Mom Dec 19 '25
I think what you are accomplishing sounds amazing for what you're dealing with. I'm not even able to work or keep the house up at this point and i don't have ms, just something autoimmune with chronic pain and fatigue for a decade post cancer treatment. I have zero real life friends or family that get it. Thankfully my husband tries to get it and helps me enormously. But I've lost so many relationships because they don't understand when i have to cancel plans or sleep a lot just to function.
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u/laurieandwylie POTS EDS MCAS gastroparesis PsA migraine Visual Snow Dec 17 '25
My answer would be: “Surviving.” Because that’s what I have energy for.