Growing up with a rare congenital disorder
I have congenital Panhypopituitarism. I had originally posted this in a community forum I am in for other people who share my disorder, but I wanted to share this here as well for anyone growing up with a rare disease.
I think the hardest part of living with a rare congenital disorder is learning what is normal, and what is caused by the disorder. Not many people know about your condition, and you are pretty much left to figure it out on your own. Your doctor prescribes your medication, but there is no personal conversation about what you might experience, at least that's how it was for me. You are left in the dark, and grow up without knowing the difference between everyday normal life, and what is being caused by your disorder.
For instance, I lived most of my life being told by people that I am lazy. Unaware of the existence of the serious fatigue caused by my disorder, I grew up depressed thinking I was lazy and useless, when in reality I wasn't going out to play simply because I had no energy to do so. Discovering the reasons behind the fatigue and other aspects of my disorder has felt to me like I am a child discovering the world for the first time.
Feel free to share your own experiences with this. I'm looking forward to reading your comments!
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When I turned 13 I got ill and just didn't get better, about two years later I was diagnosed with Chronic Fatigue Syndrome.
During the time before my diagnosis the social services threatened to take me away from my parents if they didn't make me go to school - which I was way to ill to do - and it practically broke my mum's heart to make me go through that. I lost my friends, my (previously good) grades became a concern to the teachers and if I missed any school they would just give me all the work to complete when I got back, and that was on top of the daily schoolwork and homework assigned.
The doctor's said it was all in my head and did nothing, eventually I developed severe depression on top of the CFS and later also insomnia(it's like my body can no longer differentiate between the daily fatigue and sleep time), when I was around 17 I tried to end it all by overdosing on my medications.
It's now been 7 years since I first became ill and I'm still not any better, though I do have a greater understanding of the CFS and how it affects my body, I left school at 16 with only one minor qualification and have still not improved in my condition enough to achieve any more.
I'm constantly in pain and exhausted, I take medications for depression, insomnia and pain, among other things. My doctor has run out of things to try and just keeps me on repeat prescriptions and monthly appointments but I can't go to a new doctor for fear of having to go through the disbelief and emotional trauma (and it was very traumatic) all over again before we get anywhere.
I haven't seen any of my existing friends or my family members in 8 months now and I'm house bound and alone for 10 hours out of 24 a day.
And that has been my teenage years and life up until now...
•••
God, I am really sorry about the rant, I'm debating whether to submit this at all.
I'm sorry if it doesn't fit with the topics being discussed, it did basically become a pity party 😞.
During the time before my diagnosis the social services threatened to take me away from my parents if they didn't make me go to school - which I was way to ill to do - and it practically broke my mum's heart to make me go through that. I lost my friends, my (previously good) grades became a concern to the teachers and if I missed any school they would just give me all the work to complete when I got back, and that was on top of the daily schoolwork and homework assigned.
The doctor's said it was all in my head and did nothing, eventually I developed severe depression on top of the CFS and later also insomnia(it's like my body can no longer differentiate between the daily fatigue and sleep time), when I was around 17 I tried to end it all by overdosing on my medications.
It's now been 7 years since I first became ill and I'm still not any better, though I do have a greater understanding of the CFS and how it affects my body, I left school at 16 with only one minor qualification and have still not improved in my condition enough to achieve any more.
I'm constantly in pain and exhausted, I take medications for depression, insomnia and pain, among other things. My doctor has run out of things to try and just keeps me on repeat prescriptions and monthly appointments but I can't go to a new doctor for fear of having to go through the disbelief and emotional trauma (and it was very traumatic) all over again before we get anywhere.
I haven't seen any of my existing friends or my family members in 8 months now and I'm house bound and alone for 10 hours out of 24 a day.
And that has been my teenage years and life up until now...
•••
God, I am really sorry about the rant, I'm debating whether to submit this at all.
I'm sorry if it doesn't fit with the topics being discussed, it did basically become a pity party 😞.
I welcome the vent, it's no problem! I made this thread so we could share our stories and support one another. You're not off topic at all. ^^
You have gone through much worse emotional trauma than I have for sure. At lease my disorder can be tested for through simple bloodwork. I could develop CFS because of this, and I've had some serious bouts of fatigue, so I can really empathize with you a little bit there. The sad thing is, even with a diagnosis and medical proof of my ailments, people have a hard time understanding why I am too weak and tired to keep a job or go to college. It's like they only believe in physical, visible disabilities. If they can't see it with their own eyes, it doesn't exist, and I have shown them PROOF. I can't imagine how frustrating it must be to have no proof, and people will always look at that and think your symptoms are psychosomatic and thus treatable by pushing yourself a little harder. If only they knew how it felt to have no energy. It's awful, feeling weak and dizzy for apparently no reason, and if you try pushing through it you get weaker, nauseous, dizzier, and more fatigued on top of that. I've had times where it felt like I'm trying to walk through water. I couldn't even prepare my fiancee's peanut butter and jelly sandwiches for him to eat at work. That felt awful because I can't keep a job so I promised to work as hard as possible around the house. I'm really lucky he's so understanding. But yeah, that feeling is terrifying, and definitely depressing as hell. It's only gotten that bad a few times for me (all in the past couple of months, which is a little startling) I can't imagine feeling like that most of the time.
People need to be more understanding.
I'm really glad you didn't die when you tried killing yourself. I feel much less alone having someone else to talk to about this.
You have gone through much worse emotional trauma than I have for sure. At lease my disorder can be tested for through simple bloodwork. I could develop CFS because of this, and I've had some serious bouts of fatigue, so I can really empathize with you a little bit there. The sad thing is, even with a diagnosis and medical proof of my ailments, people have a hard time understanding why I am too weak and tired to keep a job or go to college. It's like they only believe in physical, visible disabilities. If they can't see it with their own eyes, it doesn't exist, and I have shown them PROOF. I can't imagine how frustrating it must be to have no proof, and people will always look at that and think your symptoms are psychosomatic and thus treatable by pushing yourself a little harder. If only they knew how it felt to have no energy. It's awful, feeling weak and dizzy for apparently no reason, and if you try pushing through it you get weaker, nauseous, dizzier, and more fatigued on top of that. I've had times where it felt like I'm trying to walk through water. I couldn't even prepare my fiancee's peanut butter and jelly sandwiches for him to eat at work. That felt awful because I can't keep a job so I promised to work as hard as possible around the house. I'm really lucky he's so understanding. But yeah, that feeling is terrifying, and definitely depressing as hell. It's only gotten that bad a few times for me (all in the past couple of months, which is a little startling) I can't imagine feeling like that most of the time.
People need to be more understanding.
I'm really glad you didn't die when you tried killing yourself. I feel much less alone having someone else to talk to about this.
I feel this so hard. I have Cystic Fibrosis and I have so many people tell me "you're just lazy" "you just need to exercise more" "its all in your head" and the like. It gets so frustrating sometimes. But us spoonies have an awesome support system in each other <3
Damn right, we do have the best support system! It can be hard to find another person with an illness like this, but when we do find them, we're like instant family. I'm in a PHP group on Facebook, and they have gotten me through some pretty tough times. I was swapping stories with one of them yesterday, and she said her doctor told her this: "It's like you're a cripple, but nobody can see it the wheelchair."
It really can get depressing when people have a hard time believing someone can have a debilitating illness without any physical proof, and that can be a hard thing to have to deal with. My fatigue has gotten so bad lately that I have to fight to get out of bed, and I'm afraid to tell my family because most of them won't understand.
It really can get depressing when people have a hard time believing someone can have a debilitating illness without any physical proof, and that can be a hard thing to have to deal with. My fatigue has gotten so bad lately that I have to fight to get out of bed, and I'm afraid to tell my family because most of them won't understand.
I have something similar, but it's difficult to pin point. I had a somewhat normal childhood minus depression and family drama, but I had a stroke when I was 16. I usually don't like telling people about the stroke because the second I do everyone tends to jump on me that anything I do that they don't like or approve of is because of the stroke. When I try to explain to them about the stroke, I'm automatically rude. I understand not everyone will find the brain as interesting as I do so maybe my excitement is taken the wrong way.
People will never understand until they experience it for themselves, I suppose.
True.
There are a couple people on here with various chronic conditions, if you browse complaints a little you can find some of us.
Yep, it sucks all over, no matter what it is. People who don't have to deal with it don't understand...sometimes I'll try something like 'so you know when you have the flu really bad, and you're really tired and hurting and you just feel like shit and it's really, really hard to deal with doing anything...yeah, that, every day, knowing it's never going to get better.' Though even that doesn't help much since the best frame of time they have there is about a week...
Yep, it sucks all over, no matter what it is. People who don't have to deal with it don't understand...sometimes I'll try something like 'so you know when you have the flu really bad, and you're really tired and hurting and you just feel like shit and it's really, really hard to deal with doing anything...yeah, that, every day, knowing it's never going to get better.' Though even that doesn't help much since the best frame of time they have there is about a week...
I avoid Complaints like the plague after the forum trolls came back. Haha Posting there is an emotional gamble for me anymore. I used to be pretty active in that forum, actually.
What you explained there is so true. I don't feel that bad unless I miss a few days of my medication, though. What disorder do you have?
What you explained there is so true. I don't feel that bad unless I miss a few days of my medication, though. What disorder do you have?
Maybe a new group/thread needs to be started if people just want to fuss about this one...
My sister was born with a thyroid disorder and my dad has had many things surface since he was electrocuted, including various gland problems. While I don't share your experience with your condition I do have something of my own and I'm aware of people who have conditions like yours, including family members. Not the same, but similar.
I have Aspergers. It was diagnosed as SPD back in the 90's if you could pass for more or less normal because they didn't want to give the DX. Too much media stigma. I come off as normal but awkward which makes it hard to explain things I can't do or handle because people think I just don't want to instead of wanting to hear that it's physically impossible. It's been genetic in my family for generations but the media has corrupted the idea of what ASD disorders are so badly that it's difficult to make anyone understand, especially when they tend to treat you like you have the mind of a goldfish instead of having an above average IQ. While ASD isn't rare (that we know of but we're now handing the DX out like candy instead of looking at obvious differences) no two ASDs are alike. I've only met one other person in my life on the same part of the spectrum I am. I haven't met or heard of anyone else quite the same. I have no clue what normal is.
I'm sharing this because while I don't know what it is to have your dx I do know what it is to feel "lost at sea" so to speak and alone with something that makes you feel different from everyone else while not being able to really know what "normal" is for them. They can't understand where we come from if they're "healthy" or "normal" (whatever that is). If conditions are invisible it's even harder, especially when they ask us to do something we can't. They don't realize it's like asking a paralyzed individual to stand up and make hoops.
I did some searching for you. There seems to be a few facebook pages as well as these. I hope they help a tiny bit. Please let me know if I can help further.
www.experienceproject.com/grou…
blog.gosh.org/patientsandparen…
My sister was born with a thyroid disorder and my dad has had many things surface since he was electrocuted, including various gland problems. While I don't share your experience with your condition I do have something of my own and I'm aware of people who have conditions like yours, including family members. Not the same, but similar. I have Aspergers. It was diagnosed as SPD back in the 90's if you could pass for more or less normal because they didn't want to give the DX. Too much media stigma. I come off as normal but awkward which makes it hard to explain things I can't do or handle because people think I just don't want to instead of wanting to hear that it's physically impossible. It's been genetic in my family for generations but the media has corrupted the idea of what ASD disorders are so badly that it's difficult to make anyone understand, especially when they tend to treat you like you have the mind of a goldfish instead of having an above average IQ. While ASD isn't rare (that we know of but we're now handing the DX out like candy instead of looking at obvious differences) no two ASDs are alike. I've only met one other person in my life on the same part of the spectrum I am. I haven't met or heard of anyone else quite the same. I have no clue what normal is.
I'm sharing this because while I don't know what it is to have your dx I do know what it is to feel "lost at sea" so to speak and alone with something that makes you feel different from everyone else while not being able to really know what "normal" is for them. They can't understand where we come from if they're "healthy" or "normal" (whatever that is). If conditions are invisible it's even harder, especially when they ask us to do something we can't. They don't realize it's like asking a paralyzed individual to stand up and make hoops.
I did some searching for you. There seems to be a few facebook pages as well as these. I hope they help a tiny bit. Please let me know if I can help further.
www.experienceproject.com/grou…
blog.gosh.org/patientsandparen…
It's cool. xD The first commenter and I talked it out over notes and she's actually a pre try cool person, she just gets annoyed when people don't follow the rules. It was a big, messy misunderatandung, but it's amillleared up now.
You explained all of that very well, actually! You seem really smart. What is your IQ, if you don't mind me asking?
I'm really glad you understand this feeling I had described here. "Lost at sea" is a perfect description for sure.
I'll check out those links later. I'm on my phone right now and it likes to bug out whenever I try to load new pages. I'll let you know when I look at them! Thanks!
You explained all of that very well, actually! You seem really smart. What is your IQ, if you don't mind me asking?
I'm really glad you understand this feeling I had described here. "Lost at sea" is a perfect description for sure.
I'll check out those links later. I'm on my phone right now and it likes to bug out whenever I try to load new pages. I'll let you know when I look at them! Thanks!
I can totally understand misunderstandings. 
I'm glad that's all it was. Aww... thanks!
I don't mind. I took a test the other day after it came up in a civil law class. It said 121 but there was an idiom I had never heard before (a lot of times ASD's have to learn idioms rather than understanding them naturally) and a few geometric questions I was too lazy to work out. Who goes around with a perfect imagine of an octagon in their head so they can draw lines through it? I know it's got eight sides but seems how I'm terrible at math that doesn't help a lot. It's hard to tell an ASD IQ with an NT (neuraltypical) test. I took the Raven test which is designed for ASDs and they never sent me my results... I know there's been occasions my dad has taken various IQ tests and they tell him to stop cheating. 
There's others of us out here... Just don't push me in the water... I can't swim... (literately 
)No problem.
I also asked on a fb page if there was any support groups, no response as of yet but there's been some likes. It was only posted an hour ago. Oh, that's really cool! ^^ I haven't taken an IQ test before, and I'm honestly a little afraid to. xD
I'm already in an PHP/ GHD group on Facebook, actually. ^^ It;s run by the MAGIC Foundation. The only problem is most of the people there are twice my age, so it's hard to relate sometimes.
I'm already in an PHP/ GHD group on Facebook, actually. ^^ It;s run by the MAGIC Foundation. The only problem is most of the people there are twice my age, so it's hard to relate sometimes.
I took it at IQtest.com. Totally private. I was a little anxious too because I figured it would be full of math and a bunch of unfriendly other things... I was wrong.
Aww...
Hopefully someone will have an idea on the other page by the time you're done moving. (Good luck with the move! )
Totally private. I was a little anxious too because I figured it would be full of math and a bunch of unfriendly other things... I was wrong.Aww...
Hopefully someone will have an idea on the other page by the time you're done moving. (Good luck with the move! )Me too. It's one of the two college courses I have a C in. I just can't retain the rules.
You mentioned an apartment in another post? Fingers crossed! It's on my newsfeed and I haven't seen many posts yet but sometimes it takes time.
It's one of the two college courses I have a C in. I just can't retain the rules. You mentioned an apartment in another post? Fingers crossed! It's on my newsfeed and I haven't seen many posts yet but sometimes it takes time.
I am terrible with math. Seriously.
We're not moving anywhere, but I hope they don't look down on me for being so young!
We're not moving anywhere, but I hope they don't look down on me for being so young!
I'm looking to commune with others who have been living with this frustrating experience so that we can support one another. ^^ This is something that is very hard to live with by yourself.
That may be, but if you'd read what I linked to you, the forum rules, you'd know that kiosk threads like this are against the rules. If you want to offer help, offer it through replies to other threads.
But you see, that's the thing about rare disorders. They are rare. Nobody else is asking for help with this. I have read the rules, and this is no kiosk thread. This would be a kiosk thread if I had said "tell me your problems, I'll help you". I have simply created a forum focused on this rare disorder, open to allow others to express how this has effected their lives as well. That is how I am using this thread to receive help with life. I just need to be reassured that I am not alone in this.
I will gladly lock this and post it in a different forum if you could tell me where this topic belongs, it doesn't seem to fit anywhere else.
I will gladly lock this and post it in a different forum if you could tell me where this topic belongs, it doesn't seem to fit anywhere else.
I have to ask, did you read the link? Because the HWL rules are clearly stated there.
- "The Help with Life Forum is for those that would like serious advice for real life concerns.
Before posting, please consider whether your thread would be better suited in another forum: "The Deviants Forum if you do not want advice, but would like to generally discuss a topic instead."
"Help kiosk threads where you ask people to come to you for help. If you would like to offer advice and help people, please post in their respective threads rather than starting your own."
How to provide help in the HWL forum: 
How to Provide Help in the HWL Forum
How to Provide Help in the Help With Life Forum
Common Issues in the Help With Life Forum
How to Get Help on the HWL Forum
The Help With Life Forum Starting Out
The first step to help anyone anywhere is to make the decision to act. There are so many ways to help someone, and it's so easy, but you have to press that SUBMIT button. Even if you think your advice would be obvious to the person, say it anyway! Even if you don't really know much about the problem, give them some comfort! If you've had a similar problem, share your story! Even if you think their problem is trivial, giving them a little attention can go a long way toward helping their self esteem! Don't Start Help Kiosk Threads
That is, threads
If the thread you started isn't asking for help, then you are violating the forum rules.
As the writer of that "How to provide help in the HWL forum" you linked to, I think you are unnecessarily jumping down this person's throat. Asking people to share their experiences is a form of asking for help, and relating to someone by sharing your own experience, especially when that is what they asked for, is a form of helping them.
I mean, seriously. You need to familiarize yourself with a little term called Spirit of the Law, and those rules you are linking to are NOT to prevent someone for asking people to share stories. Those rules are there to prevent people from ABUSING the Help with Life forum, which this person IS NOT doing.
Your complaint is basically the equivalent of discounting someone's answer on Jeopardy because they didn't phrase it as a question. Stop being a jerk, I beg you. And CrypticGrin, you should just not be wasting your time with this troll.
I mean, seriously. You need to familiarize yourself with a little term called Spirit of the Law, and those rules you are linking to are NOT to prevent someone for asking people to share stories. Those rules are there to prevent people from ABUSING the Help with Life forum, which this person IS NOT doing.
Your complaint is basically the equivalent of discounting someone's answer on Jeopardy because they didn't phrase it as a question. Stop being a jerk, I beg you. And CrypticGrin, you should just not be wasting your time with this troll.
Thank you so much. ^^ I really appreciate your support there. We were able to have a nice chat in notes and I explained what this thread was for a bit better. It's all good now. She's actually a pretty cool person, we were able to put a peaceful end to this. She just gets frustrated with people who blatantly ignore the rules, I think she jumped the gun on me for sure. You were definitely right about the Spirit of the Law thing, though. I think a lot of the forum enforcers should consider that. She's not a troll, though. (I'll admit I considered that before she and I talked in notes, so I can see why you might have gotten that from this conversation.) It was just one big, messy, dramatic misunderstanding.
Thanks again. ^^
She's actually a pretty cool person, we were able to put a peaceful end to this. She just gets frustrated with people who blatantly ignore the rules, I think she jumped the gun on me for sure. You were definitely right about the Spirit of the Law thing, though. I think a lot of the forum enforcers should consider that. She's not a troll, though. (I'll admit I considered that before she and I talked in notes, so I can see why you might have gotten that from this conversation.) It was just one big, messy, dramatic misunderstanding.Thanks again. ^^
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Please, if you didn't read the entire conversation, do so. We spoke through notes and I can assure you, everything is fine now.
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