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Chronic/ Invisible Illness Society Watch

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    Welcome to the Chronic/ Invisible Illness Society!


    This thread is for anybody with any form of chronic or invisible illness (or those who just want to know more about them).
    These illnesses may include, but are not limited to: Autoimmune Conditions, Asthma, HIV, Diabetes, IBS, Mental Health Conditions.
    We do already have some awesome threads for conditions like ME/ CFS, Mental Health issues and Thyroid issues which you may want to check out, but you can also feel free to post here with any of those.
    For any study related issues or questions you can also check out the Disabled Students section (even if you wouldn't class your illness as a disability).

    You can use this thread to chat about illnesses, share you experience, ask questions or just have a bit of a rant. Having a chronic or invisible illness can be a very lonely experience, but hopefully this thread can bring people together and help them feel less isolated.

    While here please try to be sympathetic of and respect other people and their situations. Illness can be a very sensitive issue and can also vary a lot from person to person. Please remember that your experience or those of people you know may not be the same as another persons even if they have the same condition. Due to the sensitive nature of this topic it would be kind to keep things you read here private or ask the person if they mind you sharing. Please also be mindful of the site rules.


    So what are chronic and invisible illnesses?
    A chronic illness is any illness that lasts more than 3 months. This can include conditions that may not always be apparent, but can flare up at times.
    An invisible illness is an illness that is not necessarily obvious to observers.

    Here are a few examples of and resources for chronic and invisible illnesses:
    Autoimmune Conditions http://www.healthline.com/health/autoimmune-disorders
    Diabetes https://www.diabetes.org.uk/Diabetes-the-basics/
    Chronic Fatigue/ ME https://www.omf.ngo/what-is-mecfs/?g...Fcsy0wodXx4B2w
    Mental Health issues https://www.mind.org.uk/information-...alth-problems/
    Asthma https://www.asthma.org.uk/advice/und...hat-is-asthma/
    IBS (Irritable Bowel Syndrome) http://www.nhs.uk/conditions/Irritab...roduction.aspx
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    (Original post by Kindred)
    Welcome to the Chronic/ Invisible Illness Society!
    This thread is for anybody with any form of chronic or invisible illness (or those who just want to know more about them).
    These illnesses may include, but are not limited to: Autoimmune Conditions, Asthma, HIV, Diabetes, IBS, Mental Health Conditions.
    We do already have some awesome threads for conditions like ME/ CFS, Mental Health issues and Thyroid issues which you may want to check out, but you can also feel free to post here with any of those.
    For any study related issues or questions you can also check out the Disabled Students section (even if you wouldn't class your illness as a disability).

    You can use this thread to chat about illnesses, share you experience, ask questions or just have a bit of a rant. Having a chronic or invisible illness can be a very lonely experience, but hopefully this thread can bring people together and help them feel less isolated.

    While here please try to be sympathetic of and respect other people and their situations. Illness can be a very sensitive issue and can also vary a lot from person to person. Please remember that your experience or those of people you know may not be the same as another persons even if they have the same condition. Due to the sensitive nature of this topic it would be kind to keep things you read here private or ask the person if they mind you sharing. Please also be mindful of the site rules.


    So what are chronic and invisible illnesses?
    A chronic illness is any illness that lasts more than 3 months. This can include conditions that may not always be apparent, but can flare up at times.
    An invisible illness is an illness that is not necessarily obvious to observers.

    Here are a few examples of and resources for chronic and invisible illnesses:
    Autoimmune Conditions http://www.healthline.com/health/autoimmune-disorders
    Diabetes https://www.diabetes.org.uk/Diabetes-the-basics/
    Chronic Fatigue/ ME https://www.omf.ngo/what-is-mecfs/?g...Fcsy0wodXx4B2w
    Mental Health issues https://www.mind.org.uk/information-...alth-problems/
    Asthma https://www.asthma.org.uk/advice/und...hat-is-asthma/
    IBS (Irritable Bowel Syndrome) http://www.nhs.uk/conditions/Irritab...roduction.aspx
    Great idea for a society I've had asthma for 17 years now, i m very fortunate that i've kept it reasonably well managed for a few years now, although like anybody would it can sometimes be frustrating taking medication every day, i didnt always take it properly as a child. Although at least it's treatable, i think my dyslexia and dyspraxia have caused me a lot more frustration as there is nothing medically that can help me.
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    I've got an autoimmune blood condition that's largely invisible except when I'm having relapses (which I'm in the middle of atm) and it's a bit of a struggle with uni. I'm still always grateful though, because it could be a lot worse.
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    No love for plantar fasciitis and other foot pain sufferers? "Don't worry, you'll get used to standing up for 8 hours" is the biggest lie ever told.
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    I have asthma and was diagnosed with ME/CFS and PoTS, but I'm now unsure about the ME diagnosis as I'm currently undergoing tests for PTHP (Post-Traumatic Hypopituitarism) which is basically a severe dysfunction of the pituitary gland after a head injury, which I suffered when I was younger, and if I'm diagnosed with this condition then the ME/CFS could have been a misdiagnosis.

    (Original post by sknudson)
    No love for plantar fasciitis and other foot pain sufferers? "Don't worry, you'll get used to standing up for 8 hours" is the biggest lie ever told.
    No possible way the OP could limit every single invisible condition tbf - hence using the phrase "not limited to".
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    (Original post by claireestelle)
    Great idea for a society I've had asthma for 17 years now, i m very fortunate that i've kept it reasonably well managed for a few years now, although like anybody would it can sometimes be frustrating taking medication every day, i didnt always take it properly as a child. Although at least it's treatable, i think my dyslexia and dyspraxia have caused me a lot more frustration as there is nothing medically that can help me.
    Thanks for sharing. Glad you can keep it under control most of the time. Still it sucks to have to manage things like that though. I think dyslexia and other LDs can be extra frustrating sometimes cos they're so deep routed and affect how you think. Things like asthma you can usually see that it's an illness, but with LDs it's a little like you're actually the issue yourself. Obviously that's not true- you're awesome- but I find it can feel a bit like that sometimes.

    My dyslexia is relatively mild (I assume), but it still pisses me off sometimes. Had a super helpful behavioural optomatist who sorted me out coloured glasses and explained thing like pattern glare to me. He also worked out that i'm not astigmatic (as I had been told previously), but that my eyes don't quite work in sync. That's apparently a brain issue that you can improve though and I'm pretty sure he has helped me with my eyesight which is crazy awesome.
    Not everybody is that amazing though. Recently saw a doc for totally unrelated stuff and I made a passing comment about my dyslexia meaning I don't read much. She then pointed out to me that "dyslexics can read- they can't write". I'll just ignore the whole reason I was diagnosed I guess. Clearly the psych who tested me is an idiot. :mute::naughty:

    (Original post by Eva.Gregoria)
    I've got an autoimmune blood condition that's largely invisible except when I'm having relapses (which I'm in the middle of atm) and it's a bit of a struggle with uni. I'm still always grateful though, because it could be a lot worse.
    Oh dear. I hope you feel better soon (even if it does just mean waiting for the next relapse). :console:
    Uni can be a real struggle when you have health problems. I assume you've already looked into all the support you can recieve, but if not be sure to talk to Student Support and ask about DSA.
    I don't think I'd have managed to stay at uni half as long as I did if it weren't for the support I got!

    oh, a bit unrelated, but I love how well your username colour matches your picture.

    (Original post by sknudson)
    No love for plantar fasciitis and other foot pain sufferers? "Don't worry, you'll get used to standing up for 8 hours" is the biggest lie ever told.
    There's plenty of love for everyone! :hugs: I'm just not familiar with a lot of conditions.
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    (Original post by Kindred)
    Oh dear. I hope you feel better soon (even if it does just mean waiting for the next relapse). :console:
    Uni can be a real struggle when you have health problems. I assume you've already looked into all the support you can recieve, but if not be sure to talk to Student Support and ask about DSA.
    I don't think I'd have managed to stay at uni half as long as I did if it weren't for the support I got!

    oh, a bit unrelated, but I love how well your username colour matches your picture.
    Yeah I've found ways of coping with it and don't even notice it half the time (which is why I'm so grateful) and the disability advisers already know who I am 😫 I can't go two months without receiving an email from someone asking how I am which is nice when I think about it ☺️

    Didn't do that on purpose I can assure you, I just so happen to like those colours 😊

    Edit: I've also got anxiety which is more or less under control atm but I'm worried it'll rear its ugly head again when I least expect it.
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    (Original post by Kindred)
    Thanks for sharing. Glad you can keep it under control most of the time. Still it sucks to have to manage things like that though. I think dyslexia and other LDs can be extra frustrating sometimes cos they're so deep routed and affect how you think. Things like asthma you can usually see that it's an illness, but with LDs it's a little like you're actually the issue yourself. Obviously that's not true- you're awesome- but I find it can feel a bit like that sometimes.

    My dyslexia is relatively mild (I assume), but it still pisses me off sometimes. Had a super helpful behavioural optomatist who sorted me out coloured glasses and explained thing like pattern glare to me. He also worked out that i'm not astigmatic (as I had been told previously), but that my eyes don't quite work in sync. That's apparently a brain issue that you can improve though and I'm pretty sure he has helped me with my eyesight which is crazy awesome.
    Not everybody is that amazing though. Recently saw a doc for totally unrelated stuff and I made a passing comment about my dyslexia meaning I don't read much. She then pointed out to me that "dyslexics can read- they can't write". I'll just ignore the whole reason I was diagnosed I guess. Clearly the psych who tested me is an idiot. :mute::naughty:
    .
    Yes it's like you re fighting against your own brain in a way and then you get annoyed you can't do something then it makes whatever task you re attempting even worse like a vicious cycle, took me years to tell myself to stop and deal with the frustration when I need to.

    Unfortunately many medical professionals don't understand LDs very well, I remember telling an asthma nurse I found using a spacer fiddly being dyspraxic and she had no clue what I was on about. Good to hear that coloured glasses have helped you, I haven't found anything like that useful but I ve got a tiny bit of astigmatism and my glasses at least help me focus a bit more.
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    (Original post by Eva.Gregoria)
    Yeah I've found ways of coping with it and don't even notice it half the time (which is why I'm so grateful) and the disability advisers already know who I am 😫 I can't go two months without receiving an email from someone asking how I am which is nice when I think about it ☺️

    Didn't do that on purpose I can assure you, I just so happen to like those colours 😊

    Edit: I've also got anxiety which is more or less under control atm but I'm worried it'll rear its ugly head again when I least expect it.
    That's sweet of them. It'd probably get on my nerves after a while, but it's nice to know they're there for you.

    That makes it even more awesome!

    Oh god- mh issues. I've been mostly depression free for a couple of years now, but I still panic that it's coming back whenever I get sad. I even had a whole episode of thinking all my physical limitations were in my head- not helped by drs always bringing up the mh side of things. I'm gradually learning to enjoy the time I have and that if it does end up coming back I can just kick it's ass like last time. Still scares me though and I don't blame you for worrying about it either.
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    (Original post by claireestelle)
    Yes it's like you re fighting against your own brain in a way and then you get annoyed you can't do something then it makes whatever task you re attempting even worse like a vicious cycle, took me years to tell myself to stop and deal with the frustration when I need to.

    Unfortunately many medical professionals don't understand LDs very well, I remember telling an asthma nurse I found using a spacer fiddly being dyspraxic and she had no clue what I was on about. Good to hear that coloured glasses have helped you, I haven't found anything like that useful but I ve got a tiny bit of astigmatism and my glasses at least help me focus a bit more.
    Yeah. I get why, but it's really annoying that people always need to understand something to accept it. Like can you just accept that I am terrible with remembering names? I know you should know a teacher's name by second year, but I don't so deal with it. :grumble:

    Is it strange that the thing I'm most glad about after seeing that guy I can watch 3D movies better? I don't know if it's the changes in 3D technology or my sight being better, but I swear movies are less blurry now.
    Guess that shows where my priorities lie. :lol:
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    (Original post by Kindred)
    That's sweet of them. It'd probably get on my nerves after a while, but it's nice to know they're there for you.

    That makes it even more awesome!

    Oh god- mh issues. I've been mostly depression free for a couple of years now, but I still panic that it's coming back whenever I get sad. I even had a whole episode of thinking all my physical limitations were in my head- not helped by drs always bringing up the mh side of things. I'm gradually learning to enjoy the time I have and that if it does end up coming back I can just kick it's ass like last time. Still scares me though and I don't blame you for worrying about it either.
    It's difficult with mental health because you can never know to what extent it contributes to or is caused by physical health conditions. Medicine is still very much in the dark with the link between the mind and the body and with the lack of funding in the NHS, that doesn't help. I understand when you wonder if it's all in your head, sometimes when I meet with doctors I feel like they don't consider it important enough, because others are dying and are far more limited due to their conditions and sometimes I wonder if maybe I'm making it all up. Although my condition is empirically tested in biochemistry so I don't think so.

    This is an interesting thread, I feel that those of us with "invisible" conditions, sometimes feel guilty for even complaining, for example even asking for seats on the bus if I'm feeling especially tired as I can't prove that I have a condition that causes fatigue.
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    (Original post by Eva.Gregoria)
    It's difficult with mental health because you can never know to what extent it contributes to or is caused by physical health conditions. Medicine is still very much in the dark with the link between the mind and the body and with the lack of funding in the NHS, that doesn't help. I understand when you wonder if it's all in your head, sometimes when I meet with doctors I feel like they don't consider it important enough, because others are dying and are far more limited due to their conditions and sometimes I wonder if maybe I'm making it all up. Although my condition is empirically tested in biochemistry so I don't think so.

    This is an interesting thread, I feel that those of us with "invisible" conditions, sometimes feel guilty for even complaining, for example even asking for seats on the bus if I'm feeling especially tired as I can't prove that I have a condition that causes fatigue.
    My drs have a lovely habit of saying "you're young. Go do stuff" like that actually helps me. If anything it makes me feel worse cos it's rubbing in that I shouldn't be feeling like this and am missing out on life and shows me that people don't care/ believe me.

    I think some transport companies have come up with a disability card/ badge that shows people you are entitled to a seat even if it isn't obvious. I don't know if that might help. Never feel bad for needing a bit of a rest! You know your body better than they do.

    I always feel so awkward using a disabled toilet. I have IBS and it is never usually an issue, but if it is and the ladies has a huge line I sometimes end up needing to use the disabled. I've heard so many horrible stories that I'm always worried somebody's going to roll up and have a go at me for it.

    Funny little tale: I've been having a little flare up recently and my legs have been aching. I had my graduation recently too which didn't exactly help mu poor tired legs. The hotel we were at had a pool and my bf managed to convince me to join him. We found a float, so he pulled me around the pool gently while I just layed back and let the water sooth my legs. There were other people who came into the pool though and they were being careful to stay out of our way (a bit more than I'm used to even with polite people). We're pretty sure they thought I was properly disabled. They must have had a bit of a shock when I walked out the pool by myself. :mmm:
    Really nice of them to be so careful of us though. And I have found out that water is actually really soothing (while I'm in it at least). Now I just need to find a way to keep water out of my ears and my bf can finally drag me out to the local pool like he always wants to.
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    I've had asthma for about 15 years now and I've suffered from 2 asthma attacks in my life. Recently, it has improved but I still find that it gets in the way at times, especially during a demanding physical activity e.g. Playing a sport.
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    (Original post by WoodyMKC)
    I have asthma and was diagnosed with ME/CFS and PoTS, but I'm now unsure about the ME diagnosis as I'm currently undergoing tests for PTHP (Post-Traumatic Hypopituitarism) which is basically a severe dysfunction of the pituitary gland after a head injury, which I suffered when I was younger, and if I'm diagnosed with this condition then the ME/CFS could have been a misdiagnosis.



    No possible way the OP could limit every single invisible condition tbf - hence using the phrase "not limited to".
    Oh no! I missed this comment earlier. :eek:
    Hi! Sorry to hear about all the stuff you have going on. It can be really tough getting a diagnosis for some stuff and must really suck knowing you may have been misdiagnosed. As far as i'm aware CFS/ ME is a bit of a "not sure" diagnosis with little known about effective treatments though so hopefully if you do have this other thing there will be something that can help you.
    Good luck with everything and thanks for sharing. Hope you get some answers (and improvement) from all this new investigation

    (Original post by qasim_96)
    I've had asthma for about 15 years now and I've suffered from 2 asthma attacks in my life. Recently, it has improved but I still find that it gets in the way at times, especially during a demanding physical activity e.g. Playing a sport.
    Hi! Thanks for sharing. Asthma is something I hear about a lot. Guess it must be really popular
    Glad to hear you've had some improvement from before. Hope it doesn't get in the way too much.
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    (Original post by Kindred)
    Hi! Thanks for sharing. Asthma is something I hear about a lot. Guess it must be really popular
    Glad to hear you've had some improvement from before. Hope it doesn't get in the way too much.
    No problem yeah, I know quite a few people with asthma so it does seem like a real popular one. Thanks
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    (Original post by Kindred)
    Oh no! I missed this comment earlier. :eek:
    Hi! Sorry to hear about all the stuff you have going on. It can be really tough getting a diagnosis for some stuff and must really suck knowing you may have been misdiagnosed. As far as i'm aware CFS/ ME is a bit of a "not sure" diagnosis with little known about effective treatments though so hopefully if you do have this other thing there will be something that can help you.
    Good luck with everything and thanks for sharing. Hope you get some answers (and improvement) from all this new investigation
    Indeed! Tbh I'm hoping I was misdiagnosed, ME/CFS isn't really treatable as such, whereas a pituitary disorder is totally treatable via hormone replacements. Though, actually getting it isn't definite on the NHS, since the cost of doing so will be somewhere around 6k a year :zomg:
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    (Original post by WoodyMKC)
    Indeed! Tbh I'm hoping I was misdiagnosed, ME/CFS isn't really treatable as such, whereas a pituitary disorder is totally treatable via hormone replacements. Though, actually getting it isn't definite on the NHS, since the cost of doing so will be somewhere around 6k a year :zomg:
    Wow that sounds like a lot! :gasp: How come it's so much?
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    (Original post by Kindred)
    Wow that sounds like a lot! :gasp: How come it's so much?
    They're going to have to replace several hormones and some of them are very costly. One of those hormones will be Growth Hormone which is notoriously expensive.
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    (Original post by WoodyMKC)
    They're going to have to replace several hormones and some of them are very costly. One of those hormones will be Growth Hormone which is notoriously expensive.
    Would it not be covered by the NHS though (and thus the usual charge)? Surely if a deficiency shows up on blood tests they will cover supplements for that thing?
    Sorry if I'm sounding stupid, but it just seems crazy that you could need to spend that much, even needing to take multiple medications.
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    (Original post by Kindred)
    Would it not be covered by the NHS though (and thus the usual charge)? Surely if a deficiency shows up on blood tests they will cover supplements for that thing?
    Sorry if I'm sounding stupid, but it just seems crazy that you could need to spend that much, even needing to take multiple medications.
    Yeah that's what I was getting it, by the sounds of it they don't like treating the condition because it's so much of a cost to the NHS per year, so I'm hoping something will actually come of the diagnosis! Even though the Growth Hormone is the most expensive it's also vital in terms of general health, sleep, maintaining a healthy weight as you age and all manner of things, so it's not like they can miss it out of the treatment.
 
 
 
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