This Actress Was Misdiagnosed For 25 Years. Here's How She Finally Got Well
"Something happens to you when you go unheard for so long. Your soul starts to die a little, and you believe your words don't matter. I'm here to tell you that they do. If you have something going on in your body that you know in your gut is not what you are being told, you must take a stand for yourself."
I was sick, on and off, for 25 years. I managed everything from recurring sinus infections to stomach problems, extreme exhaustion to neuropathy, debilitating panic attacks to depression, and the list goes on. I was diagnosed with MS, IBS, hormonal problems, stress, and even mental imbalance. All of these misdiagnoses suggested that my symptoms weren't real—that I was making them up. But in 2007, when a tooth came flying out of my mouth on the set of a television show, I knew that couldn't be from stress.
After years of not being heard, having prescriptions and psychiatric recommendations thrown at me, everything changed. All it took was one female doctor sitting with me for two hours—caring enough to listen. Within a few days, 25 years of unanswered questions had been resolved.
The answer was celiac disease—the worst case this doctor had ever seen. I'll never forget her exact words to me: "I don't know how you're still alive." By that time, the disease had wreaked such havoc on my body that my liver and kidneys were in distress. You see, celiac disease is all about the gut and your ability to absorb nutrients from food. If your body isn't getting those nutrients, it basically starts to feed on itself.
My journey to healing has been a long, hard, beautiful road. Now, by telling my story and starting a bakery, I'm making celiac awareness and advocacy part of my life. I'm happy and helping people.
If I hadn't stayed active during those 25 years of searching, I don't know where I'd be right now. But it isn't easy. The opening quote in this article is from my book, Jennifer's Way, and it perfectly describes the destructive nature of feeling unseen, unheard.
So, here are my tips to help you become (or continue to be) your own biggest advocate. After all, it is your body. You know you better than anyone. Whether your issue is celiac or something else, you have the right to know. Trust your gut.
1. Do your research.
Ask friends about their doctors, Google them, get reviews, and ask questions when you call to make an appointment. For example, "How long is a visit?” Yes, time does matter. Many doctors see so many patients a day that visits are kept to 15 minutes or less. Look for practices that say appointment times vary or that it depends on the case. This suggests they see patients as people, not numbers.
2. Come prepared.
Do your own research. Ask about specific areas or symptoms of concern. If you have several symptoms of Celiac disease, make sure you ask to be checked for it. The same is true for any illness.
3. Be firm in asking for what you want and need.
There are wonderful doctors out there, and I have true respect for what they do. They are so needed. However, they are human, and humans are not perfect. We all make mistakes. And this is your body, your health. There is nothing wrong with questioning what a doctor says. The number of people who have written to me saying that their doctors wouldn't test them for celiac only to find out later that they did have it is crazy. Don't be shamed into staying sick.
4. Honor yourself.
Honor your body and what it is trying to tell you. Your body knows when it's healthy and when it isn't. We have so much potential for healing if we can get quiet and listen to what our bodies are trying to tell us. If you have backaches that doctors keep saying are muscular yet you have a gut feeling that they could be related to your ovaries, honor that gut feeling and go ask questions. Find answers.
5. Use nature to heal.
Whatever the outcome, look to food to help you heal. I am a living example of the power food can have to turn a life around. We are self-regenerating creatures, just like nature. Let the natural healing potential of the world around you do its work. We all deserve to be healthy, happy, and whole.
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