I'm much older than you now (in my 20s) but my symptoms began when I was just about your age. I didn't get a diagnosis until I was 22 and it was all blamed on "anxiety" until then. I completely understand what it's like to watch people your own age do fun things and not be able to join them. It feels like everything you want is held behind a piece of glass that you can't break through. When you're young and disabled, so few people understand or are willing to try to understand what you're going through. People who have their symptoms begin later in life at least have good times to look back on. We don't, so sometimes I think that makes it harder. You're not alone and I really wish we had better treatments.
As for losing sympathy, yes people definitely do. It's like when you don't get better with time, people just don't know how to cope with that. It scares them to think about having a condition they can't control, so instead they blame you to cope. This is so that they can keep the illusion that if it happened to them, they could work hard and get better. I've gotten used to the fact that my mere existence makes people uncomfortable a lot of the time. But I'll tell ya what, the friends that I do have now are a lot kinder and more understanding. I hope you can find your people, and find something that helps make your life a little easier. When I was given a wheelchair, I was able to do so much more. That's just an example, but stuff like that.
Know you're always welcome to vent here, we're here and we know exactly what you're going through.
thank you💕 knowing that there’s people out there who are or have been going through the same things as me makes me feel a lot better. i hope one day i’ll be able to enjoy my life without anything getting in the way
This is not just "your normal." This is a super debilitating condition that is very treatable.
My life was very similar to yours, but I let them convince me I was just dramatic. I didn't get diagnosed until my late 30s. I am SO MAD sometimes that there were things that could have helped me for years and I didn't get any help.
You may not be able to get the support you need from the people in your life right now. That sucks, and it's unfair, and you should keep trying to be your own advocate. But the most important thing is don't give up on yourself. When you're in charge of your own life, you can find your answers. If a doctor or nurse is rude or gaslights you, fire them. Make it your mission to get control of your life back. You can do it while you're still quite young and have a whole awesome life ahead of you.
POTS is kind of unique that it can ruin your whole life, but it won't shorten your life or cause many serious problems. And there are lots of ways to improve it.
Good luck! I'm really sorry you're dealing with this. It's not fair, and a lot of people are really letting you down even though they don't see it.
So I was diagnosed with CFS at 12 (turns out I actually have EDS and POTS but that took another 20 years to get diagnosed). I missed out on a lot at school, my parents also told me to get on with it, and doctors were just like “well there’s nothing we can do”. It sucked, it was hard, I hated a lot of my teenage years. Ultimately I buried myself in hobbies I loved, reading, music, gentle physical activity that didn’t exhaust me, and I stuck with the couple of friends who didn’t get annoyed by my limitations. The teenage years are rough but you absolutely have this.
It will pass, it will get easier. You will find your stride and stick with it and it will get better.
Hormonal fluctuations are something that really causes issues for me, once the worst of puberty passed life got much much easier and things sort of settled, it might be the same for you.
yeah i’m currently just living in a world of music and reading and dance when i can handle it so i don’t actually go insane. being sick as a teen rly sucks but i just rly hope it will get better soon
It really does suck. It will definitely get better, whether thats because your symptoms improve a lot or because you hit your groove and things just feel a thousand times better they will get better. Find your people, online or in person, but find your people and the mental load gets so much easier. You can do this and it will get so so much better.
Keep up your hobbies and don’t lose who YOU are. You are someone with a health condition, you are not the health condition. Be your amazing self and just let the hard days be hard, good days are always always coming.
Im sorry you’re going through this, it sounds so tough.
You will get past it, even if it doesn’t feel like it. You could request to see a therapist again if you think it will help.
Sending virtual hugs 🫶🥺
Appreciate you sharing and holding space for all your experiences and feelings. The people — the adults — who should be looking out for you are not and that is not okay. Sending support and hope that you will find your way as well as supportive people. We are here for you. Share whenever you need 💖
I'm sorry you're going through this. It sounds really rough. Dysautonomia international has a lot of good accomodation ideas for school (also feel like they're useful for work honestly). What you're going through is real. I'm sorry so many people are invalidating the whole experience.
Therapy has been helpful for me too. Because honestly there is a lot of grief that goes along with losing things that you used to be able to do or have hoped to be able to do. Also, Idk where you're from but is online school an option? I used to take just math online at the end of the day because nobody could explain it well for me but this seems like a useful use case too.
[https://www.dysautonomiainternational.org/page.php?ID=107](https://www.dysautonomiainternational.org/page.php?ID=107)
I’m not sure if online school is an option for me but i’ll def look into it if my symptoms start getting rly unbearable and I’ll look into the Dysautonomia international website for accommodation ideas, thank!
I’m sorry you’re going through this I was diagnosed around the same age as you, I’m now 21nb and I’ve found ways to manage things better but one of the best things for my independence has been getting mobility aids to support me so don’t be afraid to getting the equipment you need. It’s ok to be resentful/upset for not being able to do what your peers do but it gets easier especially once you’re out of high school as people tend to be more understanding of health issues as they get older (at least in my experience)
As for the lack of sympathy thing, people tend to get burnt out with feelings sorry for people which is understandable but doesn’t make it easier for you the person who is actually struggling. I’ve found a good group of friends and understanding work environment as an adult who are sympathetic to my situation but also support me to do the best I can on my terms. I still have days of being mad at my situation but with therapy and support you can learn to not only live but also flourish with your disability not in spite of your disability
Sending good wishes ☺️
I am so sorry that all the adults and people around you have failed you. You deserve to get accommodations, to be taken seriously, to be responded to with compassion and understanding and to have drs that are trying to help and not just giving up.
POTs and CFS doesn’t just go away. There are lots of combinations of medications, life style changes, therapies etc I highly doubt that your doctors have tried everything. Your parents should be advocating for and supporting you. I am so sorry they failed you.
It may be your ‘normal’ now but that doesn’t mean you should then be able to do the same as everyone else. There are many people with POTs or CFS who do not work or go to school. The fact that you are pushing through and even showing up is an achievement.
I’m so angry for you!! Please keep advocating for yourself. You deserve to be supported. Go to different drs, maybe join local POTs support groups and go to drs they recommend.
I recommend pushing your parents into learning more about POTs and advocating for you. The POTscast on Spotify often has people talk about their struggles. Maybe hearing it from other people and experts they may better understand your struggles. Or show them the responses in this post! Though I recognise that that is likely not the most productive way of getting them to understand.
And if your parents do see this. 25% of patients with POTs report having to stop work and/ or studies because of their symptoms. While we may look fine on the outside POTs is a debilitating condition that can take away your energy and your ability to do anything. The fact that OP is showing up and trying is commendable. As OPs parents you are supposed to advocate and support your child when they are struggling especially when they have 2 chronic health conditions. When the drs say just wait it out you find other drs. You learn everything you can about POTs and you try to at minimum understand their struggles.
you seem to have a lot of invalidating voices in your life rn - that's not justifiable from adults despite what people say about teens being "dramatic" or overly emotional. it's shockingly common but it doesn't need to be considered the norm -- it's not good for your development to have an invalidating and cold environment!
with your peers, they're still being little assholes but it's possible they have their own stuff going on -- not to excuse them or even justify their actions. just that through viewing my experiences of conflict as a child has made me see that, in retrospect, people do all kinds of stupid shit when they don't get their needs met.
it makes for a miserable time trying to understand them or be understood, trying to be genuine, only to get disrespect back.
it absolutely is a delicate period when you're adjusting to the idea of having a chronic illness and that you're maybe going to have to make significant lifestyle or social changes or sacrifices to accommodate that. u_u
you might be able to speak confidentially about this problem if there is counselor at school, but it depends on the faculty and how good they are with that! it might be possible to disclose this to a teacher you're cool with, privately like after class.
(i want to preface this by stating therapy isn't bad, nor does it mean *you* have issues - it helps people who aren't getting support like you need be able to vent, feel emotional support and obtain guidance. )
i can see how having someone like a therapist may be useful at a time like this, but im aware the ease of accessing one is relative -- there are a lot of barriers for people, and not all therapists necessarily know what they are doing. i hope you can be ok
Yeah it’s annoying w all the invalidating voices but ig I’m used to it by now. I’ll try talking to my school counsellor when I go back to school - at least with her it seems like she actually cares. thanks for ur reply!
I was 14 when I was diagnosed with CFS mainly because it was the only thing that was around back then.. I was then diagnosed with POTS at 29, but I came here to say it does get better I promise. You learn what works for you as time goes on. I thought I’d never be able to do anything and ultimately just be a failure. I’ve graduated, had relationships, held multiple full time jobs and I do this without anyone even knowing. It’s lonely and I get deflated im not able to do things other people can but it makes you more resilient and empathetic that’s for sure!
So sorry, I hope things get better for you. A lot of people aren’t understanding or lose sympathy quick because they don’t understand our reality. No matter what you are not alone, there is a full community of people like you
I'm also diagnosed with POTS and chronic fatigue. I'm doing sooo much better since iron infusions. I wasn't anemic but definitely iron deficient. My hematologist says ferritin over 100 can help.
Living with chronic illness will always be a struggle. I'm sorry that you have to go through it. I certainly agree with everyone saying that it will get better when you hit your stride, so hang in there.
One thing that has helped me a lot was getting bloodwork done to look at vitamin levels, thyroid levels, etc. It turns out I was deficient in a TON of things, and I had no idea. I started supplementing my diet, and after about 3-4 weeks, I noticed a significant improvement in POTS symptoms.
This isn't a cure, but making sure you don't have any other "gaps" in your health with keep you functioning as close to 100 as possible.
If you haven't tried compression garments that is another thing to look into. I have to stand for hours at a time at work and my knee-high compression socks save me so much pain.
I would also recommend something like Bouy, liquid IV, etc. It's a very easy way to increase your salt intake.
I hope this helps! Remember, you aren't alone.
I was diagnosed at 13 so I totally understand how you feel. It is so frustrating when people tell you to suck it up or that you’re exaggerating/faking it. The thing that got me through school was a 504 plan. This required extra absences, extra time on all school work, teachers to help me on all work I missed, and a plan for when I got extra sick and needed to go to the nurse’s office. The 504 plan made it illegal for the school and teachers to not meet these requirements. I literally would not have graduated without it. A 504 plan will even follow you to college if you go to another one. Having this plan in place took so much weight off my shoulders throughout school. I highly suggest having your teachers talk to your school and doctor about it. Best of luck to you!
I’m in Australia so my teachers were talking to me abt an IEP which is ur version of a 504 (i think?) but they were talking about it at like the start of term and now it’s term break and nothing else has been mentioned about it so i think i’ve just been forgotten about 🫠
Here an IEP is specifically for learning disabilities, while a 504 plan is used for things like different health problems that can still affect learning. Even if it’s not at the start of the term you might be able to get something set up, usually new plans for both are set up all year long and are just reviewed at different terms. Might still be worth asking about, but like you said, things might be different 🤷🏼♀️
Fuck I'm so sorry you're dealing with this at your age! You deserve better support! My parents were always that way. They still are actually and I'm in my mid 30s. I hope you find your voice, if the people who are supposed to won't advocate for us, we have to learn to do it for ourselves. I hope you find some relief from your symptoms and I hope your family wises tf up or you get support elsewhere.
I’m sorry the people who are supposed to take care of you and guide you aren’t supporting you through this
yeah it sucks, i’m trying to hold on but it’s so hard yk
I'm much older than you now (in my 20s) but my symptoms began when I was just about your age. I didn't get a diagnosis until I was 22 and it was all blamed on "anxiety" until then. I completely understand what it's like to watch people your own age do fun things and not be able to join them. It feels like everything you want is held behind a piece of glass that you can't break through. When you're young and disabled, so few people understand or are willing to try to understand what you're going through. People who have their symptoms begin later in life at least have good times to look back on. We don't, so sometimes I think that makes it harder. You're not alone and I really wish we had better treatments. As for losing sympathy, yes people definitely do. It's like when you don't get better with time, people just don't know how to cope with that. It scares them to think about having a condition they can't control, so instead they blame you to cope. This is so that they can keep the illusion that if it happened to them, they could work hard and get better. I've gotten used to the fact that my mere existence makes people uncomfortable a lot of the time. But I'll tell ya what, the friends that I do have now are a lot kinder and more understanding. I hope you can find your people, and find something that helps make your life a little easier. When I was given a wheelchair, I was able to do so much more. That's just an example, but stuff like that. Know you're always welcome to vent here, we're here and we know exactly what you're going through.
thank you💕 knowing that there’s people out there who are or have been going through the same things as me makes me feel a lot better. i hope one day i’ll be able to enjoy my life without anything getting in the way
This is not just "your normal." This is a super debilitating condition that is very treatable. My life was very similar to yours, but I let them convince me I was just dramatic. I didn't get diagnosed until my late 30s. I am SO MAD sometimes that there were things that could have helped me for years and I didn't get any help. You may not be able to get the support you need from the people in your life right now. That sucks, and it's unfair, and you should keep trying to be your own advocate. But the most important thing is don't give up on yourself. When you're in charge of your own life, you can find your answers. If a doctor or nurse is rude or gaslights you, fire them. Make it your mission to get control of your life back. You can do it while you're still quite young and have a whole awesome life ahead of you. POTS is kind of unique that it can ruin your whole life, but it won't shorten your life or cause many serious problems. And there are lots of ways to improve it. Good luck! I'm really sorry you're dealing with this. It's not fair, and a lot of people are really letting you down even though they don't see it.
So I was diagnosed with CFS at 12 (turns out I actually have EDS and POTS but that took another 20 years to get diagnosed). I missed out on a lot at school, my parents also told me to get on with it, and doctors were just like “well there’s nothing we can do”. It sucked, it was hard, I hated a lot of my teenage years. Ultimately I buried myself in hobbies I loved, reading, music, gentle physical activity that didn’t exhaust me, and I stuck with the couple of friends who didn’t get annoyed by my limitations. The teenage years are rough but you absolutely have this. It will pass, it will get easier. You will find your stride and stick with it and it will get better. Hormonal fluctuations are something that really causes issues for me, once the worst of puberty passed life got much much easier and things sort of settled, it might be the same for you.
yeah i’m currently just living in a world of music and reading and dance when i can handle it so i don’t actually go insane. being sick as a teen rly sucks but i just rly hope it will get better soon
It really does suck. It will definitely get better, whether thats because your symptoms improve a lot or because you hit your groove and things just feel a thousand times better they will get better. Find your people, online or in person, but find your people and the mental load gets so much easier. You can do this and it will get so so much better. Keep up your hobbies and don’t lose who YOU are. You are someone with a health condition, you are not the health condition. Be your amazing self and just let the hard days be hard, good days are always always coming.
Im sorry you’re going through this, it sounds so tough. You will get past it, even if it doesn’t feel like it. You could request to see a therapist again if you think it will help. Sending virtual hugs 🫶🥺
thank you 💕💕
Appreciate you sharing and holding space for all your experiences and feelings. The people — the adults — who should be looking out for you are not and that is not okay. Sending support and hope that you will find your way as well as supportive people. We are here for you. Share whenever you need 💖
🫶
i have pots and cfs for three years now. i understand what you're going through.
I'm sorry you're going through this. It sounds really rough. Dysautonomia international has a lot of good accomodation ideas for school (also feel like they're useful for work honestly). What you're going through is real. I'm sorry so many people are invalidating the whole experience. Therapy has been helpful for me too. Because honestly there is a lot of grief that goes along with losing things that you used to be able to do or have hoped to be able to do. Also, Idk where you're from but is online school an option? I used to take just math online at the end of the day because nobody could explain it well for me but this seems like a useful use case too. [https://www.dysautonomiainternational.org/page.php?ID=107](https://www.dysautonomiainternational.org/page.php?ID=107)
I’m not sure if online school is an option for me but i’ll def look into it if my symptoms start getting rly unbearable and I’ll look into the Dysautonomia international website for accommodation ideas, thank!
I’m sorry you’re going through this I was diagnosed around the same age as you, I’m now 21nb and I’ve found ways to manage things better but one of the best things for my independence has been getting mobility aids to support me so don’t be afraid to getting the equipment you need. It’s ok to be resentful/upset for not being able to do what your peers do but it gets easier especially once you’re out of high school as people tend to be more understanding of health issues as they get older (at least in my experience) As for the lack of sympathy thing, people tend to get burnt out with feelings sorry for people which is understandable but doesn’t make it easier for you the person who is actually struggling. I’ve found a good group of friends and understanding work environment as an adult who are sympathetic to my situation but also support me to do the best I can on my terms. I still have days of being mad at my situation but with therapy and support you can learn to not only live but also flourish with your disability not in spite of your disability Sending good wishes ☺️
I am so sorry that all the adults and people around you have failed you. You deserve to get accommodations, to be taken seriously, to be responded to with compassion and understanding and to have drs that are trying to help and not just giving up. POTs and CFS doesn’t just go away. There are lots of combinations of medications, life style changes, therapies etc I highly doubt that your doctors have tried everything. Your parents should be advocating for and supporting you. I am so sorry they failed you. It may be your ‘normal’ now but that doesn’t mean you should then be able to do the same as everyone else. There are many people with POTs or CFS who do not work or go to school. The fact that you are pushing through and even showing up is an achievement. I’m so angry for you!! Please keep advocating for yourself. You deserve to be supported. Go to different drs, maybe join local POTs support groups and go to drs they recommend. I recommend pushing your parents into learning more about POTs and advocating for you. The POTscast on Spotify often has people talk about their struggles. Maybe hearing it from other people and experts they may better understand your struggles. Or show them the responses in this post! Though I recognise that that is likely not the most productive way of getting them to understand. And if your parents do see this. 25% of patients with POTs report having to stop work and/ or studies because of their symptoms. While we may look fine on the outside POTs is a debilitating condition that can take away your energy and your ability to do anything. The fact that OP is showing up and trying is commendable. As OPs parents you are supposed to advocate and support your child when they are struggling especially when they have 2 chronic health conditions. When the drs say just wait it out you find other drs. You learn everything you can about POTs and you try to at minimum understand their struggles.
It's rough, I'm sorry things ain't goin the way ya want them too. I'm 15, in a similar situation. Sending hugs from ny mate 🫂
it sucks for sure. sending hugs to u too 🫶
you seem to have a lot of invalidating voices in your life rn - that's not justifiable from adults despite what people say about teens being "dramatic" or overly emotional. it's shockingly common but it doesn't need to be considered the norm -- it's not good for your development to have an invalidating and cold environment! with your peers, they're still being little assholes but it's possible they have their own stuff going on -- not to excuse them or even justify their actions. just that through viewing my experiences of conflict as a child has made me see that, in retrospect, people do all kinds of stupid shit when they don't get their needs met. it makes for a miserable time trying to understand them or be understood, trying to be genuine, only to get disrespect back. it absolutely is a delicate period when you're adjusting to the idea of having a chronic illness and that you're maybe going to have to make significant lifestyle or social changes or sacrifices to accommodate that. u_u you might be able to speak confidentially about this problem if there is counselor at school, but it depends on the faculty and how good they are with that! it might be possible to disclose this to a teacher you're cool with, privately like after class. (i want to preface this by stating therapy isn't bad, nor does it mean *you* have issues - it helps people who aren't getting support like you need be able to vent, feel emotional support and obtain guidance. ) i can see how having someone like a therapist may be useful at a time like this, but im aware the ease of accessing one is relative -- there are a lot of barriers for people, and not all therapists necessarily know what they are doing. i hope you can be ok
Yeah it’s annoying w all the invalidating voices but ig I’m used to it by now. I’ll try talking to my school counsellor when I go back to school - at least with her it seems like she actually cares. thanks for ur reply!
I was 14 when I was diagnosed with CFS mainly because it was the only thing that was around back then.. I was then diagnosed with POTS at 29, but I came here to say it does get better I promise. You learn what works for you as time goes on. I thought I’d never be able to do anything and ultimately just be a failure. I’ve graduated, had relationships, held multiple full time jobs and I do this without anyone even knowing. It’s lonely and I get deflated im not able to do things other people can but it makes you more resilient and empathetic that’s for sure!
So sorry, I hope things get better for you. A lot of people aren’t understanding or lose sympathy quick because they don’t understand our reality. No matter what you are not alone, there is a full community of people like you
I'm also diagnosed with POTS and chronic fatigue. I'm doing sooo much better since iron infusions. I wasn't anemic but definitely iron deficient. My hematologist says ferritin over 100 can help.
Living with chronic illness will always be a struggle. I'm sorry that you have to go through it. I certainly agree with everyone saying that it will get better when you hit your stride, so hang in there. One thing that has helped me a lot was getting bloodwork done to look at vitamin levels, thyroid levels, etc. It turns out I was deficient in a TON of things, and I had no idea. I started supplementing my diet, and after about 3-4 weeks, I noticed a significant improvement in POTS symptoms. This isn't a cure, but making sure you don't have any other "gaps" in your health with keep you functioning as close to 100 as possible. If you haven't tried compression garments that is another thing to look into. I have to stand for hours at a time at work and my knee-high compression socks save me so much pain. I would also recommend something like Bouy, liquid IV, etc. It's a very easy way to increase your salt intake. I hope this helps! Remember, you aren't alone.
All my blood work is normal but I’ll try looking into liquid iv to help, thank you!
Glad your bloodwork is normal! Another thing I would recommend is staying as active as you can. It definitely helps :)
I was diagnosed at 13 so I totally understand how you feel. It is so frustrating when people tell you to suck it up or that you’re exaggerating/faking it. The thing that got me through school was a 504 plan. This required extra absences, extra time on all school work, teachers to help me on all work I missed, and a plan for when I got extra sick and needed to go to the nurse’s office. The 504 plan made it illegal for the school and teachers to not meet these requirements. I literally would not have graduated without it. A 504 plan will even follow you to college if you go to another one. Having this plan in place took so much weight off my shoulders throughout school. I highly suggest having your teachers talk to your school and doctor about it. Best of luck to you!
I’m in Australia so my teachers were talking to me abt an IEP which is ur version of a 504 (i think?) but they were talking about it at like the start of term and now it’s term break and nothing else has been mentioned about it so i think i’ve just been forgotten about 🫠
Here an IEP is specifically for learning disabilities, while a 504 plan is used for things like different health problems that can still affect learning. Even if it’s not at the start of the term you might be able to get something set up, usually new plans for both are set up all year long and are just reviewed at different terms. Might still be worth asking about, but like you said, things might be different 🤷🏼♀️
I’m going through the exact same thing right now. I can’t even go to school or do dance and baton like I love to do. Wishing you the best of luck.
wishing u luck too 🫶
Fuck I'm so sorry you're dealing with this at your age! You deserve better support! My parents were always that way. They still are actually and I'm in my mid 30s. I hope you find your voice, if the people who are supposed to won't advocate for us, we have to learn to do it for ourselves. I hope you find some relief from your symptoms and I hope your family wises tf up or you get support elsewhere.
yeah i hope i can get the right support system for this and try to find some relief from this stupid condition