#teenspoonies

[teenspoonies]

hey, can i id as a spoonie if im autistic? my sister (and mum to some extent) are both spoonies and i also find the identity helpful and comforting if that makes sense

Lex says:

YES! You are definitely welcome in the spoonie community, especially if it makes you feel more comfortable. No matter what, though, invisible disabilities and autism definitely “count.”

[teenspoonies]

(1) Hi! First I just want to say thanks for the existence of this blog, I'm 17 and it's so nice to have a place aimed towards my age range for once. :) But here's my question: I have hEDS and probably some yet-to-be-diagnosed things which gives me a daily baseline pain of 4-6 (and I don't have any dislocations or some of the more severe symptoms) but PT and braces and ibuprofen just isn't cutting it. I've been wondering about mobility aids for myself for a while now but I'm struggling with

(2) not feeling disabled enough or like I have enough pain to "qualify" for a cane or crutches or a chair. I /can/ walk and 80% of the time it's not excruciating, but I have very low stamina for standing up or walking through a museum for example. I have to sit down a lot even if I'm walking fine. Idk I'm just not sure if having forearm crutches/a cane for mostly ambulatory reasons would benefit me /enough/ for my doctors and parents to bother with it? I'm basically already being told to just exercise, take ibuprofen, and act more or less "normally". Sorry this was super long and all over the place 😅

Lex says:

Hi anon! I’m really glad we can help make the spoonie/disabled community feel more inclusive. I will say that I have struggled with the same feelings and fears, so I certainly understand. That being said, I am a big proponent of getting whatever it is that you need to maximize your ability to function. Contrary to some of the ableist posts or memes you might see floating around the internet, there is no such thing as “not disabled enough,” and if forearm crutches, a cane, or even a wheelchair would help you, you should feel empowered to talk to your parents or doctor about it. What you’ll see in the literature about children and teens with joint hypermobility is that at least 25% have required mobility aids at some point, so you’re not alone.

On the subject of the rec to “just exercise and take ibuprofen,” the data shows that they’re not wrong that light exercise and PT for some strengthening so your muscles can better support your loose and stretchy joints can help. However, it can take a while for you to see any benefit, and in the meantime you need to be able to live your life. One thing I’ll mention to watch out for, though, are things with a lot of stretching, like yoga. With hypermobility, there is a lot of data to show that this can worsen the laxity, or looseness, in your joints and make them both more likely to sublux or just hurt a lot more. If your doc or even your parents has questions about this, I’m happy to share some papers with you that you can show them. It’s hard to contradict research. I’m kind of data-focused (as are a lot of docs), so sorry for focusing on the science so much. Hopefully it wasn’t too clinical or boring!

So TL;DR, if mobility aids would help you to function without terrible pain, they will always be worth it, you are valid and there is no such thing as “not disabled enough.” Yoga will not cure you, and lastly, you have a right to use what you need to make things more bearable for you! 

Hope that helps ❤️

[teenspoonies]

Apologies for my long absence

Lex says:

Hi all! I know I haven’t been very active as a mod in a way too long, and that’s been because I’ve been in medical school!

What? A spoonie in med school you ask?? It is very possible!!! 

I’m happy to answer any specific questions or share any insights about being in a tough and time-intensive graduate program with a chronic illness if anyone is interested. It’s been a lot of work, and pretty exhausting to say the least, but something that is definitely doable with some forethought. 

Anyway, my hope is to get back in the habit of responding to asks at least once a week as I see them come up. I am obviously still not qualified to answer medical questions (but hopefully in a few years I will be able to!) so I’ll still primarily be speaking to my own experience, but happy to help in any way I can.

Thanks!

[teenspoonies]

I'm not officially" physically disabled, but I do have some joint issues that can make it hard / tiring to move, but I can still walk well but sometimes have to take breaks. I guess this is a Do I count question, but also I've tried to talk to people about it but I don't think they understand because I've born with the stiffness so they don't see it's worse now, so any ideas how to talk to them?

Lex says:

First of all, it doesn’t matter how “physically disabled” you are on the wide spectrum of disabilities, you are always welcome in this community! You definitely count.

In terms of talking to friends and family about your illness/disability, a lot of people have trouble understanding things that aren’t overt. It seems that a lot of abled/healthy people have a conception of disability and illness as being something very visible. Though you obviously have to bear it to get through the day, and I absolutely wouldn’t advise you to do anything differently, your difficulties aren’t as obvious to others. That’s why honesty helps!

If you’re trying to talk to people you’re close with, it is always best to be very open and honest with them. Tell them what you’re dealing with and let them ask questions, if you feel comfortable doing that. Try not to minimize anything (“well it’s really not that big of a deal…” that sort of thing) and be frank about your limitations.

There are always going to be some people who don’t “get it,” and you’ll have to work out how much effort you want to put into trying to educate them. I would say you should evaluate those relationships, and decide what makes the most sense.

[teenspoonies]

i am so embarrassed rn i was at school and i use the elevator because of my arthritis but i dont use a mobility aid and i got off the elevator and a teacher who uses a cane was waiting for it and he started ranting at me about how abled body students need to stop using the elevator for fun and he said he was going to tell the office anf they dont know about my disability so im scared ill get in trouble i am in high school what do i do to not get in trouble

Lex says:

I think first off you should go to your school’s guidance counselor and let them know exactly what happened and what the situation is. If they know the whole story, it’s pretty unlikely this teacher will have any power to get you in trouble. Does anyone at the school know about your arthritis? Like perhaps the school nurse? If so, that person could easily substantiate your claim to actually need the elevator. If not, though, I think you’ll be fine responding if this teacher does decide to be mean and get you in trouble.

Generally I think it’s always helpful to tell schools/professors ahead of time about your disability just in case of incidents like this, or in case you suddenly have a flare and, say, need to miss school to go to the hospital. So in the future, that’s probably a great place to start. But as it stands now, just make sure you talk to the guidance counselor. If for some reason, you end up having any trouble, try to bring a parent with you to speak with the principal. They tend to be more respectful and responsive when you have an adult with you to back you up. 

Either way, if the elevator doesn’t require a key, it’s well within your right to use it, abled or not! It’s hard, but try not to let someone like that bully you into feeling badly about using it. Usually they quiet down if you calmly explain that you have a chronic illness, especially arthritis which is likely something this individual can understand, and apologize for being so rude. At least, in my experience that’s what has happened!

[teenspoonies]

@ plane anon, I brought my cane from CVS when I went to Orlando last month, no problems carrying it on either way. You just gotta make sure the TSA (if you're flying in the US) knows you need to use it through the metal detector/body scanner c:

Lex says:

Thanks anon! They actually give you one of their canes to walk through the metal detectors, they won’t let you use your own, but they have them on hand. Also if you need it, feel free to request a wheelchair to get you through security and to the gate. You don’t need any sort of doctor’s note, you just have to ask. 

[teenspoonies]

hi, I have tourettes and recently (like, the last year or so) the symptoms have escalated to a point where the tics are constant and painful. it's hard to walk some days and next to impossible on others. ive had tic atracks at least once-twice (cont)

per day for 3-4 months now. sometimes I’ve thought that a chair or cane would help (esp the chair bc then I could like. not collapse or have to crawl and I could be strapped in if I had an attack). the problem is it was never this bad and im afraid nobody would believe me. the tics are also making my back worse. I cant stand for extended periods of time/bend over/lift things without terrible pain. I don’t know what to do. am I allowed to use a wheelchair? am I exaggerating? I have to wait probably 9-12mos to see a specialist for meds, but is there anything I can do before that? I can only work 15hrs/week now, and just barely. im scared and I feel v alone. advice?

Lex says:

You’re definitely not exaggerating, and if you feel like a chair or any other mobility aid would help you, then there’s no reason why you should feel bad about getting/using one. You’re also not alone! A lot of people use things like wheelchairs even though they can technically walk for some amount of time, and there is absolutely nothing wrong with that. Do what feels right to you, and what will help you the most!

I’m sure there will be people who don’t believe you need one, and you might get some rude questions. It helps to have a prepared answer that will make you feel comfortable and help the people close to you understand why you are using whatever aid you are using. Don’t feel obligated to justify anything, though, unless you feel comfortable, especially with strangers. 

Also it can help to talk to other people who have been through similar things. If you need anyone to talk to about using mobility aids/managing chronic pain or anything like that feel free to message me on my personal blog. I’m happy to help in any way I can! 

[teenspoonies]

So, I'm going to prom with my classmate who is in a wheelchair, and his parents called the prom venue and apparently the space that the school has rented is upstairs with no elevators. The last student in a wheelchair who went to prom there was able to walk up the stairs and have someone bring her wheelchair up, by my classmate can't do that. He needs a lot of assistance to walk and he is too heavy for me to support him all the way up the stairs. (1)

Therefore, the prom is not accessible to him. Since it’s a public school event, shouldn’t they be required to have a venue that’s accessible for students who can’t walk? I’m in the USA. I feel really bad because he feels like he can’t go now, and I don’t want to go without him because he already gets excluded a lot from things because of his wheelchair. (2)

Lex says:

This is definitely a violation of the Americans with Disabilities Act! Even though it might be a really difficult thing to do, I think you should take the time to go in to talk to the principal, either with your friend or without depending on what he wants, and remind them that this is a violation of the ADA and they should make this event accessible in some way. I don’t know if that means changing the location, or finding a way of getting him up the stairs, but they are required by federal law to work something out.

I’d recommend bringing a parent or adult representative of some sort with you into the meetings, because for some reason, people tend not to take young people as seriously as they should, and tend to respond much more when they’re presented with an incensed parent rather than just a student. Your friend really shouldn’t have to miss out because the administration don’t care enough to find a location where he can be included!