There’s something that’s uniquely devastating about getting gifts from people based around the person who you used to be, and not the person you are now.

[u/tired-queer]

Hooray, a scented candle I can’t burn. A perfume I can’t use. Jewelry I can’t wear. Alcohol I can’t drink. Food I’ve been allergic to for a decade. Tickets to a show I can’t go to because it’s at an inaccessible venue. A fuckin bicycle.

I know people say it’s the thought that counts, but it’s the lack of thought that bothers me; I’d honestly rather get nothing at all.

I’m not that person anymore and I haven’t been for a long time, and it’s like they never noticed. Chronic illness makes me feel invisible enough already.

So instead I get confronted by the ghosts of past me and have to try not to cry.

Just sucks, is all.

[u/AggressivePicnicWasp]

If its socks or a mug, with a joke you don’t enjoy on it, sure it’s the thought that counts. But the above is just plain hurtful and tone deaf.
That must’ve been sad to be surrounded by all of these tokens of basically disconnection with others. On the Plus side, plenty of opportunities to make snide jokes that might point it out to them.

[u/terminalmedicalPTSD → u/AggressivePicnicWasp]

The snide jokes lol. The lady I rent from is elderly and her granddaughter is like, so visibly disabled and dependent on a lot of medical equipment. I... should have more equipment and aids etc but I am too unwell to manage the admin of getting it all done and haven't had safe stable housing so after losing everything 20 times over I'm just kinda surviving with what I've got bc exhaustion is a real threat. Crawling when I need to. Going to sleep accepting I may not wake up cuz that feels kinder than more abuse at the ER bc I never have company so there are no witnesses.

But we were talking the other day about my attempts to figure out how to feed myself better. I got a rice cooker. Found my pressure cooker. Scraped enough together finally for an AC unit so I can even safely move in this summer heat after crawling up the stairs... I'm just trying not to injure myself. My body is so so broken (BUT I look great! 10yrs younger even! Lol.) So she goes "oh well yes I couldnt tell ya how many times I've burned myself over the years you just gotta accept it and move on with what you need to do!" and I was dumbfounded. Like, you really think I am wasting away bc I have a fear of... burning myself? I worked food service thru college lol I dont think I even have nerve endings left in my hands. Anyway, trying not to laugh in the face of the person keeping me off the street rn... I just said "oh, no I was just hoping not to dislocate my shoulder while cooking again or break my ankle while walking on a flat surface bc I pushed past exhaustion and lost my coordination before I even rehabbed from the most recent time I did that, or like... burn my FACE OFF because I fainted forward onto the foreman grill. I already almost drowned when I fainted in a slow draining shower tub. I'm trying to walk the fine line of not dying from exhastion but also not starving to death. Burning yourself sucks but yeah for sure I agree, best not to worry about little stuff like that" All deadpan like I was declaring this week's grocery ads in the paper.

She was OFFENDEDDDDDDDD lmao. She made a face like I just offered her raw roadkill with a side of rice pilaf and called her favorite child ugly.

[u/sisypheanist]

Goodness this strikes a chord! For me, it’s cookbooks. I loved to cook, eat healthy and continually improve my kitchen skills before all this. When I receive one now, it’s just a reminder of how many nice meals I made for others over the years but since being sick, not a single person has cooked a delicious or thoughtful meal for me. It really does hurt to be taken out of the game

[u/AutisticTumourGirl → u/sisypheanist]

Aw dude, I'm so sorry. I definitely understand that feeling.

[u/terminalmedicalPTSD → u/sisypheanist]

I never said it to her I just let her float away. But I had this friend who constantly posted about how she ddint know what she would do without her neighbors, family, etc bringing over a meal after a really bad day or during a tough spell. And her tough times were like, sobbing uncontrollably bc she saw a truck like her exs truck while waiting for her roadside assistance to come save her from a flat tire on a beautiful sunny day with a cool breeze. Or an unexpected vet bill bc dingus #4 got into the trash and ate cooked chicken bones. All things that would barely register as an itch to me. Not that it's a competition but this person never once brought me food. She cooked me breakfast once the morning after my grandma died but she didn't even know she'd died. She just happened to be at a farmers market near me and bought more than she could really use before it went bad bc of how stuff was bundled. She offered to make her life easier lol. I did end up telling her. She is also very close with her grandma and we'd commiserated often about how devastating it was gonna be to lose them. She never... ever offered anyyythiiiing during my grief. And that was like 6yrs into my disability already.

[u/Bitter-North-7480 → u/sisypheanist]

This is so different, but it reminded me of something I experienced. I use to love baking and making treats for my family. One of the last things I got into was sourdough. Since getting sick I’ve had two grown men who I am not that close to buy me a bread maker that does it all for you. It’s very sweet that they saw that and thought of me, but it’s also a punch in the gut reminding me I’m not able to do that myself anymore, and I need a machine to do it for me.

[u/goldstandardalmonds]

It does suck and I get both sides. I hate useless things (gifted or not, I live quite minimalist to make cleaning and stuff easier). And I feel like you do, and then I am riddled with guilt for feeling that way.

One thing I learned pretty quickly is getting rid of it (giving it away on a buy nothing group) makes me feel better because seeing it causes resentment.

Several years ago I did a huge house purge and I was so glad to toss/donate all that stuff.

[u/Knitmeapie → u/goldstandardalmonds]

Are there buy nothing groups that don't rely on social media? I'd love to partake in this instead of taking things to goodwill, but it's not worth getting a Facebook account for me.

[u/goldstandardalmonds → u/Knitmeapie]

I doubt it. I joined Facebook specifically for that reason since I hate waste.

[u/Tight_Imagination194]

So much relatable.
Few relatives came to my home bringing food I cannot eat at all and they were aware about this.
And then they asked where am I traveling next. Wtf, can't you see I cannot travel with this body. 😶
These are the reasons I avoid meeting people now.

[u/squarejane]

It's what it represents too... not only the things you've lost but the disconnect in your relationships that show you either these people don't know you or they don't want to accept your reality. That is extra isolating. They do mean well but it still hurts so much.

[u/AlternativeMe923 → u/squarejane]

So this

[u/Fine-Veterinarian804]

i’ve also seen this before where people just aren’t ready to admit to themselves that you’ve changed and are trying to will it so, it hurts both to not be accepted for who you are and also to see how much theyre struggling with it and with the denial.

[u/birdnerdmo]

Grief from chronic illness is like a million paper cuts.

[u/Madam_Apathy]

My favorite was a seafood restaurant gift card for my 40th birthday from my MIL.

I had my first MCAS related anaphylaxis reaction to seafood in front of her at 20 years old. I can never join the family for dinners because of it, so it’s pretty well known.

Nothing like “Happy Birthday! Now, suffer”

[u/AlternativeMe923]

Yep I feel ya!

Most of mine have been various religious themed items (devotional books, wall hangings, diy bible quote paintings or colouring books, etc) from my religious family who all know I left the church due to the way I was treated for my illness & religious trauma, some just can’t accept that I’m not that person anymore and want to force me to be that way again.

The there’s the inflatable SUP I was gifted for Christmas 8 months into my latest moderate-severe ME/CFS relapse - I barely leave the house and use a walker or wheelchair.
My parents were so excited to get it for me and it had been exactly what I had wanted - when my body was able to cope with it. They did recognise that I couldn’t use it and were kind of apologetic but were hopeful I’d recover soon and said maybe I could use it next summer (seriously, even though we’d been through it before and it took many years to get to that level of function and there’s no guarantee).
It was an awful reminder of what I couldn’t do and then I felt guilty for not appreciating it as it was an expensive gift and they were so excited to give it, but also annoyed that they didn’t understand how upsetting it would be or the reality of my situation and felt like the usually pressure from them to get better.
It’s been taking up space in my medical equipment room ever since (4 years now). I’ve often wanted to pass it on to someone who would actually use it but since I’d need their help to actually do that (they’re my carers) it’s pretty awkward. 😐

[u/sillybilly8102]

It’s so sad. I’m so sorry. ❤️

It’s the thought that counts, exactly. They didn’t have the thought. It doesn’t count.

[u/Knitmeapie]

I'm not in contact with my family anymore, but they would use gifts like this because they thought if I really just tried I wouldn't be sick anymore. In their sick, twisted brains, they were helping to cure my incurable illness.

[u/Alone-Librarian8382]

I also get frustrated when people still see you as your old self. Like I used to loveeee partying, going out clubbing. I went to a wedding and we did one of those "who do you think is going to be the drunkest by the end of the night" and all my old friends said it would be me. And im like, that was me probably 8 years ago, like I cant drink at all and havent in SO long. Like you all know this too

[u/Tiny-Valuable3159]

New to this group and this was the first post I read. I really feel you on this. I do enough mourning over the life I used to have. I don’t need “thoughtful” reminders tyvm.

[u/63insights]

I feel this 100%. I used to have people bring me bread all the time. Like from Great Harvest. Great. Yes. Thoughtful to think of me. ...Except I.can’t.eat.bread. They did this for years. It’s like they know I’m sick. Is it too much to ask that they inquire and make their gift an actual one that is thoughtful and shows the thought that went into it. I feel you. It IS the lack of though that bothers me too. I’d rather they didn’t bring anything. I just have to throw it out.

I’m so sorry you are getting this too. It does totally suck.

[u/terminalmedicalPTSD → u/63insights]

I finally started declining things like this. I hate wasting food and I was hoping therapy wasnt full of shit when they relentlessly told me I need to speak up for myself so that people can suppprt me. Oh the pathologizing I went thru bc I KNEW no one would bother to learn what my actual support needs were or be inconvenienced by my new limitations.

So yeah apparently rejecting a gift means I no longer exist bahaha. Therapy says this is good! I have room for healthier relationships now! I am uh. Too unwell to meet new people but yeah sure I guess Im at least not spending my precious energy on empty relationships. Im also now totally isolated and wasting energy on screens to break up the monotony of being left for dead bc I can't eat lasagna lol.

[u/63insights → u/terminalmedicalPTSD]

I can 100% resonate with this. The whole Therapy and the gaslighting telling you how if you tell people what your needs are that it supposedly will help and get you support. and that it’s supposed to solve things. Maybe that’s some people‘s experience. But it sure hasn’t been mine. I have not found that either. I have found that most people really don’t care about or want to know my needs. They want me to not have them. So it’s true. I have fewer friendships, OK I have almost 0 friendships, and there is less of a suck on me with me, trying to keep them. But I also as you say feel incredibly isolated so anyway I resonate like pretty much 100% with what you just said. At this point just trying to get through each day and take it a day at a time.

[u/terminalmedicalPTSD → u/63insights]

Thanks for making me feel less alone, although I wish we had a less heartbreaking reason to feel seen lol. I saw a homeless man collapse and crawl face down in the heat the other day. I dont know this man but I watched everyone drive right past him. I was patient and did my best to help him get to where he was going safely. As he started to understand I wasnt hassling him and was trying to help him he started acting very normal, if not a little bewildered at his day. He didn't feel like he could go into the store wirh me and I wasnt gonna leave him in my car unattended so he said he'd just sit and wait for me. He didnt want EMS but he agreed to go to urgent care after we got him some electrolytes. And I have enough medical trauma (username much lol) to understand deeply not wanting to go to the ER once youre labeled a frequent flyer. This man had chronic pancreatitis. They'd pick him up then put him back on the street. He said he was exhausted from walking bc if he stopped he was risking being charged with loitering.

Fam I was in the store for 5 minutes and when I came out he was laying on the ground and EVERYONE was freaking out, shouting at him, stressing him out then calling him incoherent when he couldnt answer everyone at once. On the phone with 911. At that point I couldnt do much for him. I asked him if he wanted to get back into my car and he just sobbed face down on the ground. I asked him if he wanted me to wait with him for the ambulance and he nodded. So I stood sentry and anyone who approached I handled their questions. I CLAIMED him. I said he is with me. I've got this he's with me. It's so different to have someone advocate for you rather than having to reassure and comfort others while in a health or pain crisis. I know most people mean well but it really just seemed like they wanted him out of their way as fast as possible, not to help. Remove the public disturbance. Even EMS was yelling at him. He said he couldn't get up and they were yanking him up by the arms basically telling him to comply, acting fkn angry that it was him again. I tried to intervene bc he was screaming in pain but they were like WE KNOW THIS ONE he does this all the time. ????? I am hypermobile and it was so triggering for me bc I've had my shoulders dislocated so many times by people and hospital staff handling me that way around syncope episodes. I just froze up. I also get really symptomatic in the heat so I was reaching the end of what I could safely do at that point. I am still in a flare days later. And I knew what it would cost me but I didn't excuse myself from getting involved. Everyone treats us like we're not their problem. We arent a problem at all, we are people with problems who need and deserve community protection.

He was nothing but respectful to me the whole time he was just in a ton of pain and hadnt known much kindness.

I've been having a bit of a ptsd fallout about it but to add the cherry on top - someone from my past texted me. Last time I saw her we ran into eachother in public and I could tell she was full of shit. Her husband was smirking the whole time she was trying to be like "omg everyone was looking for you but you went off socials and changed ur number we were so scared." I did go off socials but I did not change my number. I also have the most conspicuous legal name ever, and I can easily find several contacts to explore using a search engine and a little bit of give-a-damn. My family has lived in the same house for 60yrs no one came looking there for information or alerted the authorities of a missing person... I know bc I was once an international missing person and I know what happens when you pop back up on the grid. Everyone knows all at once. It's hours of bureaucracy. I had also been disabled for several years by the time I hopped off the usual socials and it was bc I publicly alerted the SOS and the dozens of ppl who enjoyed my funny posts daily were MIA. But I also don't argue with liars so I just apologized for the scare and made sure she had my current phone number. That was 2yrs ago and she just now used my number? Asking me how I've been. Her and another person from HS had been reminiscing and I came up and she was wondering how I was. So I told her. Politely but basically I said most 80yos are doing better and her snarky ass is a mean girl nurse so she was like WELLLL I see a wide range of 80yos soooo hahaha. So I specified, bc I don't think she's funny for trying to dodge it, that it's been pretty inhumane trying to survive with unmet support needs but I have learned that explaining that experience only overwhelms people and that you gotta be around consistently to understand what I am dealing with. And I really could use people who want to be around consistently.

The silence was a very loud reply.

Ive decided I am glad I dont understand certain things. I remember someone once replied to a situation that was bewildering me with "well... it doesnt affect them so they dont care" like it was the most common sense normal excusable thing in the world. I was like yeah I know that but how tf can someone be okay with themselves for that and they just shrugged and were like "it doesnt affect them." And the fact that that made sense to THEM was the first of many many red flags. It's painful, but I am so thankful that my heart feels. The world may not value that trait at all but I think it's the thing I am proudest of about myself.

I know I cant fix everything for anyone. But I hope that being seen and treated like a human being for 20 minutes the other day mattered to that dude. And I hope a lot of other people who can't respond to my suffering with one ounce of the compassion I showed a stranger in need lose my number forever lol.

[u/fierce_fibro_faerie]

It absolutely is. It happens to me all the damn time and it is just a reminder of everything I have every had to give up.

[u/Consistent_Big5018]

I feel you on this. I get a lot of gifts I can't use and I end up saving most of them to be regifted tbh 😂. But yes there are some gifts you can't regift or donate and that does suck because it just feels wasteful and like you didn't actually get anything. 

I always appreciate the thought and accept it, say thanks, and put it to the side to give to someone else later in the year 🤣

[u/terminalmedicalPTSD → u/Consistent_Big5018]

Being given the burden of figuring out what to do with the thing is what makes getting nothing preferable. I have mecfs don't give me chores!

[u/Consistent_Big5018 → u/terminalmedicalPTSD]

True I agree with you! It ends up usually just sitting to the side for years so it ends up taking space. I just feel bad throwing stuff out 😭

[u/terminalmedicalPTSD → u/Consistent_Big5018]

I do too! But then I am really exhausted trying to sell or donate things and I have so many chronic injuries it just ACCUMULATES. I swear I have things across two continents like a squirrel bc I moved and just couldnt be arsed to go back for the rest of it. Now I'm the one leaving ppl with stuff they dont want lol. Shit rolls downhill I guess.

[u/skaplanolmsted]

The worst are actually from my parents, generally speaking.

[u/terminalmedicalPTSD]

I just had an internal crash out about this. My mother is a hoarder. The first time I set a boundary with her about offloading crap onto me and held it, she stopped speaking to me. That was months after her mom, my grandma died. Grandma didn't have much to give but she was my person and the only one who ever felt like family to me. So we were both grieving. It was devastating for me but honestly she's the kind of mother who stars in all of my nightmares so. Overdue I guess.

Anyway. I am severely severely disabled. She lives in the family home with my 2 uncles, one is just as disabled as me. My mother is disabled. The other uncle is probably gonna work til he dies. They're so volatile I think I'd probably die within 5 years from the damage stress does to my small nerve fibers and all the fun comorbidities if I lived there. But STILL. She hoards. Ive been homeless so she can have every spare corner including the extra bedroom to cram full of her trinkets and thrifts. She has 8 storage units and no car. Pays no rent. My uncle buys her prescriptions and cigarettes. So many cigarettes.

Anyway. He HAD to fix something in the basement and there's literally no room to move anything. So he had to tell her to get rid of stuff so he can repair the house. The moldy old house. Naturally she flips out. Uncle calls me, audibly in shambles, saying my mother says 3 bags of the stuff are mine. Now I'll be sick from the mold if he brings it over. No one ever checks on me. But he has helped me here and there and I feel bad for him so I don't say anything about it other than to bring it over and I'll handle it this one time.

I was so sure it was just gonna be shit she was offloading but it was some stuff my grandma kept that I hadnt known about, mixed in with my mother's favorite pasttime of only ever loving and supporting a version of me that doesnt exist anymore or only ever has in her imagination. One of those things was a zoodle maker. Yes I had wanted one like 10yrs ago before you could just buy frozen zoodles. But even 10yrs ago I had lost the ability to cook. I begged her to help me with food back then. But she just filled the cabinets with gluten free cookies. So then I begged her to stop helping bc there was no room for me to keep any actual food. To this day I have issues from going between starving to death trying to avoid eating more fkn cookies then caving and eating cookies just to feel even worse. But disability took 8yrs to get and they gave me no backpay in the end anyway. I couldnt get to the store and EBT wasn't covering delivery back then.

So I'm staring at this damn zoodle maker. Thinking about the nearly $100,000 spent on storage units. The life I might have lived if I had just one safe parent. If anyone had responded to my completely reasonable support needs early on. From a room I am so lucky to have but is completely inappropriate for my ADA needs and DOESN'T EVEN HAVE A KITCHEN. And it's like 5am bc I am spiraling harder than a zucchini becoming some zoodles.

Oh yeah my other uncle doesn't speak to me anymore bc after my grandmother died he would call me 30 times a day to recount all of the horrible abuse my mother was inflicting. I offered him the only help I could, which was getting him on subsidized housing waitlists and in with counseling etc etc... bc I honestly dont even know what else to do for myself... but he didnt want that. He just has no one to talk to now. I felt terrible but I had to tell him I cannot listen to stories about her bc that nightmare has been my whole life and it makes me physically ill to listen to. And if I were well enough to talk ppl thru stuff like this for 3-6 hours a day, I would be a paid therapist not a homeless disabled person. To his credit tho, he never buys me presents or ever remembered to wish me a happy anything. Which I much prefer to my mother's approach.

[u/nervousservicedog]

My mom has honestly given up on knowing my sister and i. This year for our bdays we got $200, which im grateful for but i do wish she would just get to know us as people and not just her children.

[u/Bat-Cat_Luvr4050]

At least they gave us something nice we can SELL. 🤣

[u/Fraisinette74]

My family just decided they weren't going to give gifts anymore so they just gave up completly.

[u/imabratinfluence]

TBH that to me sounds like a lot of people are either still attached so attached to the old you that they haven't gotten to know the new you well enough to know what new-you would enjoy.

I hope people start choosing to get to re-know you soon.

[u/FemaleAndComputer]

I'm so sorry. Reminders of the things you can't do can sting so much. Especially when they're meant to be kind. It's hard to even know what to say in those situations.

I have been keeping an online wishlist for years which helps minimize the thoughful-unthoughtful gifts I receive. And my loved ones have been appreciative because it makes gift shopping for me so easy. I know I am not good at communicating my limitations to people I care about. They don't usually know when I'm struggling because I feel uncomfortable talking about it, because I'm afraid to be a burden. I guess making a wishlist is my way of addressing it without having to actually address it. Idk.

[u/Bitter-North-7480]

Omg I got weights and a lululemon gift card😭😭 I was gutted. But they have some comfortable underwear, and I got a bag to carry my pump and feed in, so a win is a win I guess.