It’s April Adrenal Disease Awareness Month.
As he told you Nicole Audrey Spector
In high school, I started not feeling like myself, just a lot less energy than I usually had. It seemed perfectly normal to think it was stress related. School got more and more intense as college approached, and then there was the usual teenage stuff of dating and managing friendships.
In college, I started having other symptoms like anxiety, nausea, dizziness, low appetite, and trouble regulating my body temperature. In a freezing winter I would be in the car with the windows down. Even weirder: My skin had a slightly tanned, jaundiced hue, especially around my knuckles.
I wondered if my fast paced life was getting to me a bit, if maybe I was just stressed.
I saw a primary care doctor who examined me and did a blood test. All my labs looked good. And even though I was losing a little weight, I looked fine—or so everyone told me. My slightly darker, slightly yellow skin tone really complimented me. “You look so tan,” people would say.
By the time I got to the end of college and was about to go to grad school out of state, my symptoms had become almost unbearable. I was so drained that just getting dressed in the morning felt like climbing a mountain. I couldn’t stand without feeling dizzy. I had fainting spells. I would walk around the room just fine and then collapse.
A primary care physician examined me and suspected that my problem was psychological. He sent me to a psychologist who tried to hypnotize me. I went maybe twice at most, leaving undiagnosed, unguided, and completely convinced that my physical symptoms were all in my head.
I made several visits to the ER, seeking relief from incessant vomiting, dizziness, and abdominal pain. They would say I was severely dehydrated and give me IV fluids. Liquids always made me feel better — but not for long.
I was hopeful that a cardiologist would have answers after running various tests on me. He didn’t. A doctor prescribed me low blood pressure medication, which helped somewhat with the dizziness, but my other symptoms continued to rage relentlessly.
I started to think I was a lost cause.
Eventually I got so sick that I had to take a semester off from school and come home. I was practically bedridden and too weak to do much for myself.
My father ended up being the one who saved my life, in a sense. He heard an ad on the radio where an endocrinologist was talking about rare autoimmune diseases. It was like a little bell rang in our universe. Ding, Ding, Ding! Could this be it?
My parents took me to an endocrinologist. Tests revealed that I did, in fact, have an autoimmune disorder: Addison’s disease. The severe symptoms I had for years were Addisonian seizures, which happen when your adrenal glands don’t produce enough stress hormone cortisolwhich we all need to survive.
My endocrinologist told me I was lucky to be alive. A major Addison’s attack can kill you.
Addison’s disease is rare and can be difficult to diagnose because routine tests often come back “normal.” In addition, its symptoms may resemble those caused by other conditions. You can also look perfectly healthy while your body is completely shutting down.
Many people living with Addison’s do not receive the correct diagnosis initially. Like me, they may suffer for years thinking they have a mysterious disease with no cures.
When I finally received the diagnosis, I was incredibly relieved. I had been through so much. Not just in terms of symptoms, but in terms of tests. I had a CT scan and even a spinal tap. I was beginning to believe that I was not physically ill but psychologically. I finally had an amazing doctor who really understood what was going on with me and could help.
There is no cure for Addison’s, but it can be treated with corticosteroids. It’s a matter of getting the levels right in your body and you should be on medication for life. You will also need to have your cortisol levels checked regularly to ensure proper dosing.
For me, there was some difficulty in finding the right dose of medicine. At first, I felt a bit tired. But once the dosage issue was resolved, I felt like myself again. I was very happy and so were my family and friends. I got my life back. My prayers had been answered and I felt so incredibly blessed.
Today I take a corticosteroid medicine three times a day and a blood pressure medicine in the morning. Stress and illness hit people with Addison’s very hard because we can’t produce enough cortisol to handle it. I still sometimes end up going to the ER with a stress-induced Addisonian crisis (a high-dose cortisol shot gets me back on my feet). But most days, I’m steady.
Addison’s disease may be rare, but keep in mind that “rare” in this case still means that tens of thousands of people around the world live with it. And while it can affect anyone, most of those diagnosed are women.
I hope that awareness of Addison’s disease will increase and that awareness will lead to increased funding for more research and training for medical specialists. If I had known about autoimmune diseases including Addison’s when I first started experiencing symptoms, I probably would have been diagnosed right away and saved years of debilitating symptoms and self-doubt.
But I’m focusing less on the fact that it took years to get the diagnosis and more on the fact that I was lucky enough to finally get it. I am thankful for my health care providers and my faith for guiding me to this point where I can be present with my family and friends to make every moment count.
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