“Doctors didn’t know what was wrong with me.”
“The frustration of not knowing what was wrong with me was overwhelming.”
“It made me wonder if I had gone crazy.”
Sound familiar?
Unfortunately, these phrases are all too common for those of us living with a rare disease.
You’d think by now with all the awareness efforts out there, doctors would be more aware of the possibility of rare disease. Or, you know, instead of making a person feel crazy, doing some research to figure out what conditions they might be missing.
But far too often, it’s easier for doctor’s to just think someone is being over-dramatic; especially if that someone is a woman.
Unfortunately for Lindy, a TV producer, her journey to getting diagnosed with Addison’s disease involved way too many years of not being heard, validated, or taken seriously.
And that’s a serious problem.
Why? Because left untreated, Addison’s disease can cause an adrenal crisis, which means your adrenal glands completely fail and you could possibly die without immediate treatment.
Which brings up the question – again – why aren’t more doctors aware of Addison’s disease?
People often claim the lack of awareness and the fact that the disease is so rare. Personally, I think those are excuses. There are plenty of resources available for doctors who truly want to get to the root of the problem. Whether doing some research or consulting with other doctors, there are other ways for doctors to help people like Lindy.
Lindy suffered with incredible pain, exhaustion, and fatigue, to the point that getting out of bed in the morning was ridiculously hard.
Finally, after years of suffering, when Lindy got her diagnosis, her first reaction was
“now that I know what’s wrong, we can fix it!”
But as we know, living with a chronic disease is not always that easy.
