u/Bigprettywheels

I went to my dr. two days ago, and I was a bit confused about something he said.

He told me that *technically* I don't have any disabilities... though I'm diagnosed with HEDS and fibromyalgia. And I know that, in a way, those are considered disabilities?

I was in a bad flare and in my wheelchair because I couldn't walk well (he also said there's such a thing as "too much rest" after seeing me in my chair.) But in this same visit, he was outraged at himself and the ER for not getting me a referral to a neurologist for daily seizures for a little more then three months and was also encouraging/approving about a seizure alert service dog, which is what I was asking his medical opinion on when this comment came out.

I'll be honest, it made me have a bit of imposter syndrome. Like I'm playing it up for attention? Or that I'm not "sick enough" to be considered disabled? Idk really because I know how these symptoms affect my daily life. How its hard to shower (I have to sit in the shower now) Or how i have to sit to do dishes or hell, even open soda bottles. I have to get my boyfriend or use my teeth because my fingers dislocate. Or how I wake up in full body pain daily. And I've been telling him this since the first appointment that pain, a cycle of inability to eat anything substantial because of nausea, weak joints, and some days where I full on can't move affects how I do everything. I can barely work part time, and now we add on daily seizures that have me go home early, that put me out of commission for about six to seven minutes. But I'm not medically "disabled"

Sorry for the rambling. I'm just incredibly confused by his reasoning. And I was shocked so I didnt ask him why.

I went to my dr. yesterday, and I was a bit confused about something he said.

He told me that *technically* I don't have any disabilities... though im diagnosed with HEDS and fibromyalgia. And I know that, in a way, those are considered disabilities?

I was in a bad flare and in my wheelchair because I couldn't walk well (he also said there's such a thing as "too much rest" after seeing me in my chair.) But in this same visit, he was outraged at himself and the ER for not getting me a referral to a neurologist for daily seizures for three months and was also encouraging about at least looking into a seizure alert service dog, which is what I was asking his opinion on when this comment came out.

I'll be honest, it made me have a bit of imposter syndrome. Like I'm playing it up for attention? Or that I'm not sick enough to be considered disabled? Idk really because I know how these symptoms affect my daily life. How its hard to shower (I have to sit in the shower now) Or do dishes or hell, even open soda bottles. I have to get my boyfriend or use my teeth because my fingers dislocate. Or how I wake up in full body pain daily. And I know there isn't a cure for these symptoms. But anyway. Sorry for the rambling.

I went to my dr. yesterday, and I was a bit confused about something he said.

He told me that *technically* I don't have any disabilities... though I'm diagnosed with HEDS and fibromyalgia. And I know that, in a way, those are considered disabilities?

I was in a bad flare and in my wheelchair because I couldn't walk well (he also said there's such a thing as "too much rest" after seeing me in my chair.) But in this same visit, he was outraged at himself and the ER for not getting me a referral to a neurologist for daily seizures for three months and was also encouraging about a seizure alert service dog, which is what I was asking his opinion on when this comment came out.

I'll be honest, it made me have a bit of imposter syndrome. Like I'm playing it up for attention? Or that I'm not sick enough to be considered disabled? Idk really because I know how these symptoms affect my daily life. How its hard to shower (I have to sit in the shower now) Or do dishes or hell, even open soda bottles. I have to get my boyfriend or use my teeth because my fingers dislocate. Or how I wake up in full body pain daily. And I know there isn't a cure for these symptoms. But anyway. Sorry for the rambling.

I went to my dr. yesterday, and I was a bit confused about something he said.

He told me that \*technically\* I don't have any disabilities... though im diagnosed with HEDS and fibromyalgia. And i know that, in a way, those are considered disabilities?

I was in a bad flare and in my wheelchair because I couldn't walk well (he also said there's such a thing as "too much rest" after seeing me in my chair.) But in this same visit, he was outraged at himself and the ER for not getting me a referral to a neurologist for daily seizures for three months and was also encouraging about a seizure alert service dog, which is what I was asking his opinion on when this comment came out.

I'll be honest, it made me have a bit of imposter syndrome. Like I'm playing it up for attention? Or that I'm not sick enough to be considered disabled? Idk really because I know how these symptoms affect my daily life. How its hard to shower (I have to sit in the shower now) Or do dishes or hell, even open soda bottles. I have to get my boyfriend or use my teeth because my fingers dislocate. Or how I wake up in full body pain daily. And I know there isn't a cure for these symptoms. But anyway. Sorry for the rambling.

I went to my dr. today, and I was a bit confused about something he said.

He told me that *technically* I don't have any disabilities... though im diagnosed with HEDS and fibromyalgia. And i know that, in a way, those are considered disabilities?

I'll be honest, it made me have a bit of imposter syndrome. Like I'm playing it up for attention?

Hello!

I went to my dr today and decided to ask his medical opinion on if a service dog might be helpful to me. He only sees me about 3-6 months out, and a lot of our talks are more for medication and stuff.

He did say that he was encouraging about my getting one and I'll be getting my rhumitologist's opinion as someone of the tasks I have decided on are slightly mobility based (retrieval, dpt, and maybe button pushing)

He is encouraging about it, and we're hoping the neurologist referral comes quickly to get to the bottom of my seizures because going off the Duloxotine he had prescribed didn't help them. (He was a bit outraged that the ER didn't automatically refer me when i came in with them)

The only issue that he has was that on the medical side of things, I don't technically have "disabilities" on my record. My symptoms for my fibromyalgia and my HEDS have been getting progressively worse. I get incredibly tired with standing for too long and need to use my mobility aides more, which do help, but I have been having more flares (at least I've had longer flares) and my medication is getting to be less effective.

He did prescribe me another medication, and reading up on it, it seems to work as an anticonvulsant and can treat (epileptic) seizures as well as pain. So we will see how that works as well. All in all, it was a really good talk with him, and he agreed that it would be helpful to have a seizure alert dog (the main task I've been hoping for) since my seizures are the most debilitating thing I have. And while we are working on getting to the bottom of my seizures, he was encouraging me to work on training or looking into trainers.

I know I don't have a diagnosis yet, but it could take months for the neurologist to get me in. Though he thought it would also encourage me to get out and walk and socialize and was encouraging for the most part... I've read up on the ADA laws in my state as well as other resources detailing the specifications and I got some very good advice.

Idk if I'm really looking for anything I just thought I'd share.

For two nights, I think my body has been warning me of an upcoming Fibro flair. I haven't been getting the best sleep, and I've been working 6 out of 7 days even though I'm supposed to be part-time.

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I've had this symptom before as a kid, but I was just told I had very sensitive skin. But it feels like burning hot pins and needles everywhere, especially around my shoulders, neck, back, and scalp. And it's been so intense that I want to rip off everything because it's so uncomfortable and painful. I've tried a lot, even a straight ice cube to my skin just to fall asleep. Has anyone else had this symptom, and if so, what helps??? I don't want to stay up all night because everything makes it worse. I've just been forcing myself to lay down and trying to ignore the pain, but after two straight days, I'm losing my mind. I'm also so fatigued and in pain that I tried waking up and I went right back to bed after a cup of coffee.

For two nights, I think my body has been warning me of an upcoming Fibro flair. I haven't been getting the best sleep, and I've been working 6 out of 7 days even though I'm supposed to be part-time.

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I've had this symptom before as a kid, but I was just told I had very sensitive skin. But it feels like burning hot pins and needles everywhere, especially around my shoulders, neck, back, and scalp. And it's been so intense that I want to rip off everything because it's so uncomfortable and painful. I've tried a lot, even a straight ice cube to my skin just to fall asleep. Has anyone else had this symptom, and if so, what helps??? I don't want to stay up all night because everything makes it worse. I've just been forcing myself to lay down and trying to ignore the pain, but after two straight days, I'm losing my mind.

I've noticed something. And while I want to be respectful, I am going to rant and get a little spicy.

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I get so much love and support talking about symptoms and how various treatments are going and stuff like that. Which is exactly what I want and need. I need a community where I can talk candidly about stuff that I can't say to the able-bodied individuals who are my immediate friend group.

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BUT!!!! When I talk about the idea of getting a service dog or even mention it barely once.... the amount of shit that crawls out of the woodwork is.... frankly, getting a bit old.

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I know there are so many things that happen to get people to be like this... with ESA dogs/animals (valid in their own forms and rights), and grandma Tilda wanting to take little froufrou inside Walmart with her when froufrou hasn't done a singular task in their life, or even people being annoying and overtaking SD rights by slapping a vest on a reactive and out of control dog and claiming it to be a service dog because they want to be special.

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But motherfucker, the attitude of some teams is just pissing me off. I'm new to the idea of getting a service dog, and it's because of the fact that I have disabilities. Actual, diagnosed disabilities. And I have been pushed out of communities that I have been a part of for like a week because I'm new. And while I have researched, I don't know everything. So I asked for advice. And all I got on any SD related community or chronic illness community when it comes to a SD post I post in I get these people who act like they're in an exclusive club and weren't also new to it.

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TRIAL AND ERROR HAS BEEN A THING FOREVER!!! PEOPLE ARE NEW TO THINGS.

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It's like looking at someone who has a drive wheelchair or a hospital wheelchair (like mine and I saved for like two to three months to even afford it.) Or a cane from Walmart because A DIAGNOSIS DOES NOT CHANGE THE FACT THAT THERE ARE MOBILITY ISSUES,PAIN, AND PROBLEMS and saying that they're not allowed that item because you know more about mobility aides then they do.

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I have tried so many different things, and doctor appointments are hard, and referrals can take years. And people sometimes need help and support NOW. I can't use a grabber because my grip strength SUCKS and I drop things like forks and my phone and my wallet and keys and books and even my medication CONSTANTLY... and I can't force my hands to grip something longer than a minute unless it's propped up. I have seizures that make me stop breathing that when I did have an animal (a cat) two months ago, it took her three different seizures and she actually started alerting after thise three because she could smell the chemical change. Her alerts were also her rubbing aggressively against my face and laying on my chest (behavior she has NEVER DONE BEFORE)

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And guess what???? That actually helped me. When I had one doing dishes, she alerted by getting onto her hind legs and pawing at my thigh (another never done before action and behavior) and it helped me get safely to the floor instead of falling because she alerted me and she even sat on my chest and rode out the post-ictus disorientation with me. She refused to let me up until she knew it was safe for me to do so. I did not teach her this. I did not train her to do this.

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I am in the process of getting everything figured out. But I will say that being this gate keeping and honestly rude about things to newly disabled individuals is how sometimes people die because they aren't getting the support they need. Especially because in my situation specifically, I'm a people pleaser. But that is not going to stop me from getting the help and support I deserve and desperately need. This isn't a want. This isn't a fun little experiment. I have been disabled since I was seven. I have never had the ability or the permission to allow myself to listen to my body and its needs.

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The point I want to make in this post/rant is while yes, there are people out there who are doing it for attention, and who are going into these subs and trolling, that does not give anyone the right to dictate how anyone gets the support they need. It doesn't give others that dont know your story and your health to dictate how you get that support. You are allowed to do it the way you need to. And sure, it might be best to try a few different things before jumping to SD work (which I'm sure everyone who is disabled on this platform has done, myself included).

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I'm not all knowing, hell, I might have raised puppies and trained PET dogs before, I might have raised and trained kittens, and I sure as shit know how much energy, time, and money even just a pet can be, but I don't know the first THING about training an SD.

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What I do know is kindness and empathy go a long way. Even basic RESPECT goes a long way. But just because you've been a handler for years, months, or even weeks does not give you the right to gatekeep and also doesn't mean that you yourself was once new and desprate to find something that would help, exhausted all other resources, and this was the last fucking option.

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Be kind to people who are in that position. They're doing their best. And most of the time, they're desprate.

I've noticed something. And while I want to be respectful, I am going to rant and get a little spicy.

​

I get so much love and support talking about symptoms and how various treatments are going and stuff like that. Which is exactly what I want and need. I need a community where I can talk candidly about stuff that I can't say to the able-bodied individuals who are my immediate friend group.

​

BUT!!!! When I talk about the idea of getting a service dog or even mention it barely once.... the amount of shit that crawls out of the woodwork is.... frankly, getting a bit old.

​

I know there are so many things that happen to get people to be like this... with ESA dogs/animals (valid in their own forms and rights), and grandma Tilda wanting to take little froufrou inside Walmart with her when froufrou hasn't done a singular task in their life, or even people being annoying and overtaking SD rights by slapping a vest on a reactive and out of control dog and claiming it to be a service dog because they want to be special.

​

But motherfucker, the attitude of some teams is just pissing me off. I'm new to the idea of getting a service dog, and it's because of the fact that I have disabilities. Actual, diagnosed disabilities. And I have been pushed out of communities that I have been a part of for like a week because I'm new. And while I have researched, I don't know everything. So I asked for advice. And all I got on any SD related community or chronic illness community when it comes to a SD post I post in I get these people who act like they're in an exclusive club and weren't also new to it.

​

TRIAL AND ERROR HAS BEEN A THING FOREVER!!! PEOPLE ARE NEW TO THINGS.

​

It's like looking at someone who has a drive wheelchair or a hospital wheelchair (like mine and I saved for like two to three months to even afford it.) Or a cane from Walmart because A DIAGNOSIS DOES NOT CHANGE THE FACT THAT THERE ARE MOBILITY ISSUES,PAIN, AND PROBLEMS and saying that they're not allowed that item because you know more about mobility aides then they do.

​

I have tried so many different things, and doctor appointments are hard, and referrals can take years. And people sometimes need help and support NOW. I can't use a grabber because my grip strength SUCKS and I drop things like forks and my phone and my wallet and keys and books and even my medication CONSTANTLY... and I can't force my hands to grip something longer than a minute unless it's propped up. I have seizures that make me stop breathing that when I did have an animal (a cat) two months ago, it took her three different seizures and she actually started alerting after thise three because she could smell the chemical change. Her alerts were also her rubbing aggressively against my face and laying on my chest (behavior she has NEVER DONE BEFORE)

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And guess what???? That actually helped me. When I had one doing dishes, she alerted by getting onto her hind legs and pawing at my thigh (another never done before action and behavior) and it helped me get safely to the floor instead of falling because she alerted me and she even sat on my chest and rode out the post-ictus disorientation with me. She refused to let me up until she knew it was safe for me to do so. I did not teach her this. I did not train her to do this.

​

I am in the process of getting everything figured out. But I will say that being this gate keeping and honestly rude about things to newly disabled individuals is how sometimes people die because they aren't getting the support they need. Especially because in my situation specifically, I'm a people pleaser. But that is not going to stop me from getting the help and support I deserve and desperately need. This isn't a want. This isn't a fun little experiment. I have been disabled since I was seven. I have never had the ability or the permission to allow myself to listen to my body and its needs.

​

The point I want to make in this post/rant is while yes, there are people out there who are doing it for attention, and who are going into these subs and trolling, that does not give anyone the right to dictate how anyone gets the support they need. It doesn't give others that dont know your story and your health to dictate how you get that support. You are allowed to do it the way you need to. And sure, it might be best to try a few different things before jumping to SD work (which I'm sure everyone who is disabled on this platform has done, myself included).

​

I'm not all knowing, hell, I might have raised puppies and trained PET dogs before, I might have raised and trained kittens, and I sure as shit know how much energy, time, and money even just a pet can be, but I don't know the first THING about training an SD.

​

What I do know is kindness and empathy go a long way. Even basic RESPECT goes a long way. But just because you've been a handler for years, months, or even weeks does not give you the right to gatekeep and also doesn't mean that you yourself was once new and desprate to find something that would help, exhausted all other resources, and this was the last fucking option.

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Be kind to people who are in that position. They're doing their best. And most of the time, they're desprate.

So, I just recently went to see my bf's family to talk with them about getting a puppy (he and I live in one of their like "extra" homes. So it's like asking a landlord.)

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The reason we are asking is because I need a service dog, and also, I need something to have a little more agency over. My symptoms have been getting worse, and I have seizures that I have been dealing with daily. It's really starting to affect my life, and I can not keep trying to look for positives. My bf is also getting burnt out with being my only caregiver, and we both need something to take the edge off while we are forced to wait for referrals and Dr. Appointments. This dog would be a tremendous help because not only would having a puppy help me and him be more active, we are in the perfect place to socialize the dog. And if I cant work anymore, the least I can do is raise a puppy and also do some of the day to day tasks of keeping the house clean and spending time outside and training the pup for service work (the intention for the dog. Medical devices or grabbers won't fully help me with my rapid decline, and I have nearly no grip strength or energy to do full workouts.)

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But my bf's mom biggest concern was more towards her son. And she kept saying things like "hopefully, you won't need it." And thinking of the dog as a pet. She also kept me mostly out of the conversation even though it would be my dog and my support.

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I know this is an insidious form of ablism since my bf's mom does not mean this in the full malicious manner some ablists have. She was trying to be helpful and doesn't fully know what is happening to me and what happens to mainly chronically ill people. But she was hoping my seizures would go away.... even though they haven't and might not for years. Or never. And she didn't even think of the daily pain, fatigue, or brain fog I have. She's encouraging me to find another job (but my thing is I might not be able to work, and most stay at home jobs requires a degree.) And looking through it of the ideal lens that I'll magically get better. It was exhausting, and we have to have the talk again with my bf's dad to get the actual full answer.

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The light at the end of this tunnel is that my bf is amazing and has said that even if it's a no for the place we are specially staying at, we will get an apartment and he can continue to work, and we are still going to get the dog because I need something to go right. It's been only two months since I've gotten two diagnoses and I know more are to come. Its an exhausting time but we are doing the best we can.

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I also don't know if I am overreacting here and looking for ablism where there is none. I am just looking to rant, I suppose.

So, I just recently went to see my bf's family to talk with them about getting a puppy (he and I live in one of their like "extra" homes. So it's like asking a lamdlord.)

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The reason we are asking is because I need a service dog, and also, I need something to have a little more agency over. My symptoms have been getting worse, and I have seizures that I have been dealing with daily. It's really starting to affect my life, and I can not keep trying to look for positives. My bf is also getting burnt out, and we both need something to take the edge off while we are forced to wait for referrals and Dr. Appointments. This dog would be a tremendous help because not only would having a puppy help me and him be more active, we are in the perfect place to socialize the dog. And if I cant work anymore, the least I can do is raise a puppy and also do some of the day to day tasks of keeping the house clean and spending time outside and training the pup for service work (the intention for the dog. Medical devices or grabbers won't fully help me with my rapid decline, and I have nearly no grip strength or energy to do full workouts.)

​

But my bf's mom biggest concern was more towards her son. And she kept saying things like "hopefully, you won't need it." And thinking of the dog as a pet. She also kept me mostly out of the conversation even though it will be my dog and my support.

​

I know this is an insidious form of ablism, since my bf's mom does not mean this in the full malicious manner some ablists have. She was trying to be helpful and doesnt fully know what is happening to me and what happens to mainly chronically ill people. But she was hoping my seizures would go away.... even though they haven't and might not for years. Or never. And she didn't even think of the daily pain, fatigue, brain fog I have. She's encouraging me to find another job (but my thing is I might not be able to work, and most stay at home jobs requires a degree.) And looking through it of the ideal lens that I'll magically get better. It was exhausting and we have to have the talk again with my bf's dad to get the actual full answer.

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The light at the end of this tunnel is that my bf is amazing and has said that even if it's a no for the place we are specially staying at, we will get an apartment and he can continue to work, and we are still going to get the dog because I need something to go right. It's been only two months since I've gotten two diagnoses and I know more are to come. Its an exhausting time but we are doing the best we can.

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I also don't know if I am overreacting here and looking for ablism where there is none. I am just looking to rant I suppose.

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Hello!

I just recently got diagnosed with Fibro and my boyfriend suggested reddit to gain community and maybe get some tips and tricks. I suck at listening to my body and want to know if anyone has anything that has helped them when they're in any flares? I've been trying my best but the research I've done hasn't been enough. Any advice or ways you manage would be great.

I've had mobility issues my entire life. A few years ago, I started using a wheelchair. I didn't see much ablism as ablism until I started needing my wheelchair. People would call me "hot rod" and ask me "how fast that thing could go"... it wasn't until my current partner and I were at the store that I really had my first taste of it.

It was gonna be a movie night. My partner and I were trying to find cherries for our ice cream toppings. I went to find a store employee, and I saw a near immediate change in her demeanor. She softened her shoulders and gave me a look sort of like you would with a lost puppy. I asked her for the cherries, and she put on a baby voice. She led us over to them and called me sweetie. It wasn't obvious to my partner at the time, and they didn't understand why I was a little weird after that interaction.

A few weeks ago, my partner and I were going to another store, and it was another bad mobile day, so I used my chair again. We were getting to a part of a ramp when this guy made way by getting onto the ramp we needed, leaving room for the stairs. When my partner asked him to move, he just looked confused, like he couldn't fathom the idea that we needed the ramp even though I was in a wheelchair. My partner finally saw how people treat me in the chair versus how I'm treated if I look fairly "normal." We have to make sure I can maneuver in places, and my partner hears how people talk yo me when im in the chair. And I feel a bit better knowing my partner can see the ablism on the day to day now. And will feel injustice on my behalf as well.

Just thought it's an interesting story to tell.

So I just got diagnosed with HEDS a few weeks ago, and I thought the videos of the "have you tried yoga?" Comment was like a funny thing that wasn't universal. Though, at my orientation for a new job (where afterward I had to go to the ER because of a dislocated shoulder from BREATHING EXERCISES), I mentioned that I had really flexible joints and SOMEBODY IMMEDIATELY SAID YOGA!! I was floored. I knew it was a thing, but why yoga??? Im pretty sure yoga is basically working on flexibility which might be helpful to some but.... idk. This is basically just a rant because I only ever got the "wait till youre *insert age over 35* to complain" comments.

Hi all!

So, my doctor thinks I have POTS, and I just got the first step to the diagnosis with a 2 day long heart monitor. I'm nervous because I also just got diagnosed with Fibro and HEDS. I already have been upping my water intake and I've been putting in liquid IV for the sodium and it definitely does help. But I have to go to work with this on and know how my coworkers are going to ask. Are there any favorite lines you guys have for invasive questions when you don't really want to talk about it? Or funny ones. I dont know everything and haven't done any research into this process either so if anyone knows more and is willing to share id greatly appreciate it!

Hello!

My bf and I are planning on getting a puppy and training it as a service dog (I do not have the money to pay for a dog in an organization) because I have daily seizures and mobility issues. I have done a lot of my own research on it and am still working on research. Im looking for advice and tips and tricks to make this easier on myself. Any advice?

Hi all.

I just recently got two diagnoses for some of the stuff going on (HEDS and Fibro), and I'm slowly getting used to the idea of using my cane/wheelchair. But it has been drilled into my head that using them makes you weak and that asking for help means you're not trying hard enough. Is there any way to force that mindset out? I've been trying for years, but no one I'm around is disabled or really gets when i have a subluxation or dislocation and I dont like the idea of fighting because "just use your wheelchair" gives me anxiety of not having access to some places. Any pointers will be appreciated

Hi all.

I just recently got two diagnoses for some of the stuff going on (HEDS and Fibro), and I'm slowly getting used to the idea of using my cane/wheelchair. But it has been drilled into my head that using them makes you weak and that asking for help means you're not trying hard enough. Is there any way to force that mindset out? I've been trying for years, but no one I'm around is disabled and I don't want to constantly be in a flare from trying to appear "normal" and not sick.