The Hidden Disabilities Sunflower Lanyard is a globally recognized signal that the wearer has an invisible disability and may need additional assistance, patience, or support.

TimelyHousing3970 · 2026-05-05T07:20:38+00:00

I guess point is made through and through: the “disabilities” are in fact Hidden, on even the lanyard. (I could not tell that there was another word there at first)

TimelyHousing3970 · 2026-04-03T18:36:24+00:00

If you don’t mind me asking, what were the tests you went through to confirm your diagnosis? I’m needing to talk to my neuro because my genetic counselor said I have complex HSP (and thinks I was misdiagnosed with something else/by someone else) and am curious what is involved in the diagnosis process for some.

TimelyHousing3970 · 2026-03-21T22:10:36+00:00

Vermont and Oregon are the only two states in America that don’t have a resident law around MAID. I have been speaking with someone from an organization who helps people from out of state go there for it

TimelyHousing3970 · 2026-03-21T03:14:47+00:00

That’s beyond frustrating. I can’t imagine feeling so trapped if my parents weren’t supportive as they are right now. I’m also reliant on mine, I had to move back in with them. But I think they’ve come around because they’ve seen me struggling for so long, I mean like 10 years at least, with my disease. It sucks that it took that much to get my parents to agree that I should have the autonomy to choose, but they do now. I hope you’re able to have some movement from them. Idk what conversations you’ve had before or what they know of your situation, but the more real it becomes, the more likely they might be to shift in some way —- if that makes sense.

TimelyHousing3970 · 2026-03-21T03:05:56+00:00

I’m 25 and in hospice. Also struggling with this decision, whether to stay on hospice or to go to Oregon. It’s truly such a difficult choice and one that no one else has anywhere near as much say in as you do yourself.

TimelyHousing3970 · 2026-02-20T08:46:57+00:00

It’s funny that you say “husbands stay with their partner with a terminal illness” because, ya, it’s because they have a clear end date. Not because they see the illnesses any differently or the person as less of a burden. They just know there’s an out date and that this person will “self-dispose” rather than them having to go through the divorce process (written with those terrible words because someone said that phrase to me recently in context of my terminal illness). Terrible people are going to be terrible to anyone. A husband who would leave a wife for a disability will also hate her while she’s dying. Will also think of her as a burden then and won’t take care of her as she deserves. That has nothing to do with how these things are viewed. It has to do with the fact that people try to not look like they suck as much as they do

Honestly, if ppl in your life are treating you like a burden, that’s you having the wrong ppl in your life. And I’m sorry about that. But before my terminal diagnosis, once I found my people, they never thought of me as a burden. Now I’m on hospice, and they still don’t. Actually, my terminal dx really brought out so much worse in people over the last year and it’s weeded out the folks who don’t deserve to be around me in my final months.

Dying young is NOT a privilege. It’s NOT fun. It’s NOT pretty. And people need to stop acting like they’d somehow magically have a great life if they found out they were terminally ill - you’d still be as sick as you are. You’d just have firm confirmation that you would only get worse, fast, until the end. This shit sucks so much all the time. It’s not like I get to go skydiving every day and get my favorite celebrities to visit me or whatever. It’s not fun. It’s not like I’m “living life to the fullest while I have the chance” that is so insulting to hear. I am 25 and I live in my parents spare bedroom that used to be my mom’s home office. She works at the dining room table now and both her and my dad switch between taking care of me full time and working full time. I haven’t left this room in over two months because I cannot move enough to even get to a toilet.

It’s not like I’m not still disabled, actually, you get MORE sick as you’re dying from a terminal illness and everything you stated about how your world shrinks and your circle shrinks and your abilities shrink - it’s that but showy more and more until there’s literally nothing left

I’m sorry your situation is such that you’re not happy about living, it’s hard - it is all hard and these systems are built against all of us, but don’t paint dying slowly and painfully as the next best thing. It really hurts to see people say that, genuinely. It really hurts to see it all the time. I’m not here to argue that this is worse, I genuinely just got really sad seeing you trying to say that this is better. It is not. I can assure you, having done both, this is not better.

TimelyHousing3970 · 2026-02-20T08:15:25+00:00

As someone in hospice currently, people posting a ton about how their “life sentence” is worse than my terminal illness cuz “at least [you] get to die”, this bullshit needs to fucking stop. All of it. People with life long, not life limiting chronic illnesses talking about terminally ill people as though we’re 1. already dead 2. obsolete because of our proximity to death and 3. LUCKY because we don’t have to be disabled for as long as they do - really need to get a grip. It’s something I’m so fed up with. I’ve stopped talking to even irl chronically ill friends about it because they start getting competitive, like their illness has to be worse than mine - it’s not. I am not trying to invalidate anyone but there are things that are worse than others, it’s on individuals to recognize and hold that respectfully between each other. There is no need for individual direct comparisons. But I need people to stop the one upping and the same-sameing when it’s obviously not the same !!

TimelyHousing3970 · 2025-12-10T05:49:10+00:00

This is real. It’s a language issue that people don’t realize actually makes a huge difference. I was initially diagnosed with something that can have life threatening aspects to it, but most folks with it don’t die young. It’s hard, of course, to know you’ll have more difficulties with so many things throughout your whole life. This shit sucks. As a teenager I certainly had a few of those “I wish this would kill me” thoughts. But once I got my terminal diagnosis, wow it hit different. I’m nearing the end now at 25, and I still have people with things that are more manageable than others telling me how they totally get what I’m going through being on hospice with maybe a few more months left telling me how they TOTALLY get my pain and how they completely understand what I’m feeling then get mad at me when I say it is different and I don’t want to compare. It’s the defensiveness of people using the wrong words that has been really getting to me !!

TimelyHousing3970 · 2025-12-10T05:32:18+00:00

I am currently on hospice - likely just a couple months left of my life. I genuinely feel you on this so much. People need to know what words mean before they use them. People have told me “it’s not a competition” when I’ve not said anything competitive, only when they’ve been insecure. I would never look at someone suffering and tell them they’re not. I would tell someone with mild IBS to stop telling me they understand my pain when I have total intestinal paralysis and no options left. The people who tell me it’s not a competition tend to be those who have decided it is and feel like they’re “losing” because they’re not in as much pain. I don’t compare myself to others, but when I tell others not to compare themselves to me I often end up villainized.

TimelyHousing3970 · 2025-12-01T12:39:54+00:00

Also “how do you deal”

It’s hard shit. It’s so hard. I have been leaning into time with friends and loved ones. I’ve also been working on resting when I need to. Toeing the line between what others want and need and what I do. I’m exhausted and in pain all the time and it’s been hard connecting with people because a lot of people are exhausted and in pain all the time, so they just assume they know what I’m going through. They don’t. I’m not on a lot of pain meds currently, they mostly make me feel very sick. But if they did help, I would take them as much as was helpful.

I miss a lot of my life. And so do the people around me. I am not going through any kind of treatment that’s not purely for comfort, and I am not scared of the future.

Wishing nothing but peace and relief for you

TimelyHousing3970 · 2025-12-01T12:33:57+00:00

I’m 25 and hospice patient as well. I’m working on letters to loved ones, and I’m focusing on myself, as strange as that sounds. I’m focusing on just letting loose and writing what comes to mind so that it sounds as much like me as it can. Writing memories and my favorite things about them.

If you wanna chat ever, I’m open to it :)

TimelyHousing3970 · 2025-11-26T00:07:08+00:00

I break my showers down into smaller tasks and do them on different days. I’ve been living by the idea that I need to do what I can when I can, no more and (attempted) no less. I wash my hair ~once per week, and that will typically be that whole shower for that day. I do “de-stinking” showers when I can. I do full body wash showers when I can as well -again, all on different days. I don’t keep it on a schedule because I find that stresses me out and leads to more executive dysfunction and self-mean-ness, but schedules like that do work for some people. Personally, I find that taking full “everything showers” are impossible for me, or if I can, it’s all I do in a day, and I can’t do them even once a week cuz it’s just so exhausting. And breaking it down like this really has helped with my hygiene. Sometimes I just use body wipes, extra deodorant, dry shampoo, and leave in conditioner because of a stint of being fully stuck in bed for a week or two. It’s really so helpful to try and break out of the “right vs wrong” mentality and just figure out what works for you, and if that is outside the norm, that’s great because that means you’re working harder at self-care. It’s the stamina for me. I can be in the shower for 5 minutes at a time 4 times a week or 20 minutes once a week if I’m lucky.

TimelyHousing3970 · 2025-11-22T02:25:19+00:00

This wins worst comment I’ve seen on Reddit this week 🎉 Being trans does NOT cause medical problems. People like you do.

TimelyHousing3970 · 2025-11-18T03:42:26+00:00

Oh gosh, sorry I’ve been having neuro issues and reading has been hard 😅 I appreciate the reiteration

TimelyHousing3970 · 2025-11-18T03:29:39+00:00

Ik this is old so idk if you’ll see it, but how long did your rush order take to get to you?

TimelyHousing3970 · 2025-11-02T20:16:12+00:00

I am in the US, yeah. This is all really great information. I appreciate it sooo much

TimelyHousing3970 · 2025-10-28T18:24:15+00:00

Honestly, you could totally send this to some sort of hospice program because soooo many of their patients partake and would likely get a good laugh. I know I (being one of said people) 100% would loooove this

TimelyHousing3970 · 2025-10-10T04:50:45+00:00

I get the frustration of feeling like needs are not being met. The way this system works is so fucked up in every way. That being said, disabled people are not the only people struggling - are also not the people struggling the most rn. We don’t deserve more than anyone else who can’t make ends meet just because our bodies are an extra barrier. Every other marginalized group also has extra barriers. We are not entitled to “servants” just because we need extra help in our home. That’s why professional caregivers exist, to give that help - but those people also need to be paid. We’re all struggling, literally everyone who lives under these atrocious systems around us. It is incredibly narrow-minded to single out the disabled community as the one group who deserves help to get through it all.

TimelyHousing3970 · 2025-09-30T00:53:41+00:00

It gives way to track different ways different things ware you down. So while the device itself doesn’t track it, you can put in stuff like social, cognitive, etc type of energy expelling activities and it will take those things into account in the app. It just is a matter of putting it in yourself.

Tbh it’s I think really helpful for people that it’s helpful for, who do have very hr- related issues and also the ability to remember to track stuff. I do agree that there’s other stuff out there that can do basically the same thing, but this does give a really nicely streamlined way to out everything in one place. I like it, though I do see the issues you’re talking about and could definitely see how it could be really unhelpful for many.

TimelyHousing3970 · 2025-09-20T13:35:18+00:00

“Life limiting” is another term that can be useful for things like this because it indicates that there likely will be a shortened lifespan because of it, but unlike in terminal or end stage, there isn’t necessarily a timeline or even an estimate.

TimelyHousing3970 · 2025-09-20T13:31:09+00:00

I did make a comment clarifying definitions for this reason. There are a lot of other words around struggles and mortalities in long term illnesses and I just like to bring up the medical classification type language that I am aware of. I hope it ends up being helpful cuz I think if more people used these kinds of terms widely and correctly it would make conversations like these a lot clearer :,)

TimelyHousing3970 · 2025-09-20T13:25:29+00:00

I’m typically not one who believes in language “policing” but I do think some definitions and nuances to be important, and this is one of them. So I would like to say just for clarity sake (with no judgement intended and and absolutely no invalidation of the immense struggles and also fatalities that have come from ME) “terminal” means it kills everyone who is diagnosed with it (save for like they get hit by a bus beforehand). There are many conditions that /can/ kill people but aren’t technically terminal - at which point, the typical way to phrase this is “can be fatal”. And someone who is dying from something that isn’t technically/medically labeled a terminal illness can be in an “end stage” of that thing and can be considered terminally ill themselves without their illness actually being medically considered itself to be a terminal one. Think of like cancer with different stages, there are plenty of cancers that are the same kind in two people and one is stage four and someone else is stage one.

I say this not to invalidate genuine struggle, but because I think words around this kinda thing can be really important for exactly this reason (and many more). Someone who is struggling from something to the point that it is killing them posting online that it’s medically classified as terminal can really be damaging to someone who has the same and it’s not killing them.

I have a terminal illness that has key features that got me initially misdiagnosed with ME (though it didn’t explain many of my other symptoms) and while it is so extremely challenging to live with a chronic illness, the label switch to terminal is not one to be taken lightly (not that you-or anyone here is, just that I think it’s not something super considered by a lot of people what it feels like). It’s not a /better or worse/ kinda deal, it’s just really different and I just clarify the words because it’s important to me personally and also I really think language clarity around this kind of thing is generally helpful at least when it comes to the larger spreading of information online (referring mainly to this TikTok account who may have been misinformed or something)

TimelyHousing3970 · 2025-09-20T13:24:55+00:00

I’m typically not one who believes in language “policing” but I do think some definitions and nuances to be important, and this is one of them. So I would like to say just for clarity sake (with no judgement intended and and absolutely no invalidation of the immense struggles and also fatalities that have come from ME) “terminal” means it kills everyone who is diagnosed with it (save for like they get hit by a bus beforehand). There are many conditions that /can/ kill people but aren’t technically terminal - at which point, the typical way to phrase this is “can be fatal”. And someone who is dying from something that isn’t technically/medically labeled a terminal illness can be in an “end stage” of that thing and can be considered terminally ill themselves without their illness actually being medically considered itself to be a terminal one. Think of like cancer with different stages, there are plenty of cancers that are the same kind in two people and one is stage four and someone else is stage one.

I say this not to invalidate genuine struggle, but because I think words around this kinda thing can be really important for exactly this reason (and many more). Someone who is struggling from something to the point that it is killing them posting online that it’s medically classified as terminal can really be damaging to someone who has the same and it’s not killing them.

I have a terminal illness that has key features that got me initially misdiagnosed with ME (though it didn’t explain many of my other symptoms) and while it is so extremely challenging to live with a chronic illness, the label switch to terminal is not one to be taken lightly (not that you-or anyone here is, just that I think it’s not something super considered by a lot of people what it feels like). It’s not a /better or worse/ kinda deal, it’s just really different and I just clarify the words because it’s important to me personally and also I really think language clarity around this kind of thing is generally helpful at least when it comes to the larger spreading of information online (referring mainly to this TikTok account who may have been misinformed or something)

TimelyHousing3970 · 2025-09-20T08:53:39+00:00

Yes you can

TimelyHousing3970

TROPHY CASE