Chronic Illness, No Understanding

[NnsNightshade]

I've had to face it. I have a chronic illness with no cure and poor prognosis as far as alleviating symptoms for the course of my life. Most likely this illness will follow me to my grave; It is a disabling one.... If that isn't hard enough, nobody, and I mean nobody OFFLINE, understands this. I get screamed at to get a job because disability has denied me three times (I am going for court hearing soon to appeal...I hope I win) due to the fact that I have not been formally diagnosed though doctors have all come to some sort of agreement that they're pretty sure I have said chronic disease -- and this disease is a little rare, rare enough to not make it to disability list.......

You would think people would TRY to understand what hell you have to go through on day to day basis. My parents I know are out of the question -- I was physical and mental abused by them from birth up, practically. Doctors tell me to "just deal with it". Nobody seems to even want to understand. I am pressured to try to drive, hold a job, go out of the house, when my physical disability limits me to practically housebound living. My quality of life went to 0 on the day I was struck with this...that was 2 1/2 years ago. I am only 25 and my years are slipping by and though I am trying to enjoy it the best I can at a pace comfortable with my illness, others are hellbent on making me miserable.

I've tried sitting down and talking. I've tried writing a letter. I've even had my sick spells right in front of them as they sat and basically laugh it off. How can I make people understand this and accept this is how I am and that i need to take it at my own pace? The stress they give me is making it worse...

 

[BonsaiK]

You're in quite a dilemma. If you haven't been officially diagnosed with anything, your court appeal is very likely to fail, seeing as how it hinges on you having this particular disability. It's extremely important that you get a formal diagnosis if you're going to claim that you have a disability in a court of law.

Your life will improve immeasurably as soon as you move out of home. Disability or not, I think you need to get out of there. I think that's the real issue. Good luck anyway.

 

[NnsNightshade]

I live 5 minutes away from my parents, not with them exactly. I was removed from the home due to the abuse going on. The doctors believe that I have a condition called dysautonomia, but without insurance they will not test me. I'm going back to an office to plead with them to give me some form of help. I practically gave up on doctors because each one of them told me "Well there's definitely something going on with you physically, but its nothing we've ever treated." So they just don't seem to understand how tough it is to deal with this.

My heart stopped a few seconds today again, making me near faint, but then it kicked back in. I have arrythmias like that but they don't know why this sickness effects the electric signals to my heart. I've been really ill ever since that incident as usual....it usually wears off after a day or so after that happens. All of he cardiologists I've been to say its just so strange, and most of them go "But theres really one last thing it can maybe be, but we can't treat that here." and they mention this dysautonomia (POTS I think, subset). Apparently two of my cousins have it, but not to the degree that the symptoms bother me (for everyone its different).

After looking up the words, I'm pretty convinced that the doctors are right even though they won't cover the test needed to formally diagnose it.

I also have seizure-like episodes, but they won't refer me to a neurologist either, due to me having no money or insurance. My family has a history of brain tumors as well I found out after the fact.

So it could be a number of things, but without the doctors' support, I feel pretty much hopeless..... Some of them even said I was just anxious, which I am not, because they want to chalk everything up to anxiety when they don't have the answer. Then a few tests were performed and the idea of anxiety was ruled out. So there is something going on with my body. I feel like its just lost all control over the past two years.

 

[Nickolai77]

Your lack of insurance does seem a problem: And the fact that you can't get a job because of your illness in order to pay such insurance means that your in a very unfair situation. Won't your parents pay for the insurance?

Obviously, you do NEED further testing, because a) it could well be life-threatening and b) there could be ways of curing or at least relieving the symptoms. (So you could work to pay for the insurance perhaps)

As far as i am concerned, this is why health care should not be privatised, but i don't mean to turn this into a political argument.

Good luck with the court case btw, hope you pull through okay.

Btw, i've just googled dysautonomia POTS and there are a couple of links you may want to read if you havn't already:

http://www.medhelp.org/user_journals/show/206182/Cardiology-appt-report

http://origin.news10.net/news/local/story.aspx?storyid=80762&catid=2

 

[tharglet]

That's sad... sounds like you don't live near the right sort of people...

Maybe see if there's something you can do to earn money from home - dunno what really to suggest as I don't know what you can do or what's really available in the US.

In the UK there are charitable organisations that have people you can just talk to... ok it might get you anywhere productive, but I find it really helps just to talk to someone to help get through life... again not sure what's available in the US, but might be worth googling.

With other people, though, it's best to set your expectations low - a lot of people have their own problems and overestimate theirs over yours. I've gone thru periods of having noone to talk to and it isn't nice. I think it's rather mean that people lol at you - I wouldn't do that if someone's genuinely suffering .

Shame you don't have the means to sort things out or live somewhere with a free healthcare system. For all its faults, I think it's better having the NHS in the UK, than not having it at all.

 

[SiskoBlue]

Wow, that is horrible. I'm assuming you're in America because what other country would let people suffer because they don't have insurance.

Unfortunately because you have an invisible disability you're unlikely ever to get sympathy for it. That's something you're just going to have to face up to. The world is not a fair place but people want to think there's a reason they're not suffering and someone else is.

I think your only hope is to find a support group. As your condition is so rare I doubt there's a local one but speak to the institute mentioned about and they may find a group for chronic illness or similar nearby. Don't underestimate the support other people who understand can give you. If you try to struggle on your own it's going to be very difficult for you.

I hope things improve for you.

 

[Catrina Sanford]

I have ehlers danlos syndrome and suffer pain everyday with joint damage from frequent dislocations and also have severe heart arrythmias including the ventricualr-fibrillation with syncope. i applied for disability feb 2009 and still have been denied 5 times. i finally got insurance thru the government in nov 2010. i have had heart surgery which didnt fix it, and i just had hip surgery which the doctor said was not going to fix it permanantly and i still have my other hip to get done and shoulders and knees and back. but this last hip surgery i lost feeling in my private area, my leg, and my foot so im not sure if i really want to go thru that agian. anyways, bottom line. I have been denied over and over and over 5 times total. so... sorry but depending on your luck theres no way to know if you get it. i know people that have it for minor things. My hands dont work right, my joints lock up and dislocate, they removed dead muscle tissue in my hip and put rope looking material inside it to hold it together, the labral was completely destroyed, my bones are deformed, this is in most of my joints. but yet, i cant get disability due to age and education 29yrs old with a life expectancy of hopefully 40. people like me die from ruptured anuerysms. Good luck. Ive contacted all the senators and still no results.