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Is it worth getting a diagnosis?
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Hi,
I've had a slew or seemingly random health issues since I was a child. In one of my usual google frenzies, looking for ideas, I ran across EDS. It was like finishing a content-the-dots picture! Suddenly, it all made sense. Since it is genetic, I asked my mother if anyone in our family had been diagnosed with it, and she said my cousin had. (gee, thanks for the heads up). I was planning on going to the doctor, and trying to get the process started, but she advised against it. I am able to still be covered under my father's health insurance until I am 26 (So about another year and a half), but the future of health care it kinda up in the air right now. She is afraid an EDS diagnosis would make it hard for me to get insurance. Since there isn't much to be done for it, she suggested just going on as I am. I do see her concern, however, I already have a diagnosis of MDD and OCD, so getting coverage will already be hard. So, is diagnosis worth it, or should I just deal? I am functional and able to go about my life right now, so it isn't like I am disabled. Posted on 05/28/12, 09:39 am |
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I suggest the status quo, if there is no family history of sudden death. But I also suggest talking about it with a doctor (while not pushing for diagnosis), because it affects medical treatment. 
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Excellent point. You will be able to get insurance but they'll jack up the cost. With EDS diagnosis they'll freak and may refuse or make rates so high you can't afford policy. Connective tissue disorder or laxity is generic and "double jointed" to them.
I'd get a life insurance policy in place before formal diagnosis too. Don't lie about condition but be careful and protect yourself when answering. If a dr. didn't say it then it isn't so (in this instance that ignorance works for you, not against) Don't offer anything if asked to speculate and avoid conversation going this way. They hedge their bets and so should you. The phone call that seems innocent and friendly ISN"T, its a fact finding with check list. They call in the evening.
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I would also apply for a long term care policy. You will more than likely need it at an older age but once EDS is on your file you're toast. They will never let you get one. They can also help protect your assets if you need to take medicade. I personally waited to be diagnosed because of all the insurance factors. But my Dr., diagnosed me on there own, before I could get all the policy's in place. Now I'm screwed. Good luck to you on this.
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I am glad I saw this. I think I have EDS also. With all the issues I go through I don't want to loose my insurance. With this in mind I don't think I will push for diagnoses anymore.
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