What happens when you have a disease doctors can't diagnose? Ted talk
I don't usually post this sort of thing, but I thought this was particularly good.
It's a great talk, but frustrating to hear.
It's something I have also dealt with all my life. I used to think I was just being silly or overdramatic when I would get thoughts in my head like "I really don't know most people feel like this all the time".
When hereditary angioedema was described in the literature as being autosomal dominant and it was known that laryngeal edema from it could kill, the condition was termed hereditary angioneurotic edema (HANE).
In the literature, well after people should have known better there are many times the term HANE is still used.
There certainly is a sexist component. Many of us have dealt with dismissive doctors, but when going in to the hospital with a visible swell involving or near the airway I have only heard of cases where females were accused of causing it themselves somehow, whether by biting their tongue or something else.
Even here, I deal with dismissive attitudes. Listeners telling me that it's just anxiety or panic, that my throat won't swell. People disbelieving that the allergy treatments are not useful or hurtful comments about the medications I do use. Someone pretending to have some great medical knowledge and ignoring the information as to why calling it HANE is offensive.
@AffyAvo
I understand entirely how you feel about having a completely different experience as a woman, especially a young woman, in the medical community. I'm so sorry you've had the same experience, especially with difficult to diagnose diseases. For years I was passed from doctor to doctor, each saying there was nothing wrong with me, and that I had conversion disorder and just needed to get over myself despite having extreme pain every day, intense seizures and eventually unable to use my legs or voice before I was diagnosed with dysautonomia and a brain tumor.
The video is so hard to watch because I identify with is so well, but I think that's what makes it so important.
Yea, I agree with this sad, I have undiagnosed issues, alot of times so tired, my arms and legs hurt so bad, that I struggle to function, but my issuance company has been rejected at a place that I have gone for 20+ years, so I have to start again, I sometimes just can't deal with the thought of that, but I guess when I get to the point where I am not able to do, I will get myself to find another dr.
