When Wendy Holman noticed her hair was falling out, she immediately assumed the cause to be a recent hair color treatment, and even changed stylists. However, what she thought was one bad hair week quickly turned into a nightmare. Not only was her remaining hair turning brittle, but she also had increased spurts of energy and excessive facial hair.
She made an appointment with her female primary care physician and was told that these symptoms were related to high cholesterol. Holman, then 41, was told to return in six months for a follow up visit.
When she began having vision trouble, she went for an eye check-up, where the doctor discovered fluid in her eye. Still suffering from her other symptoms, Holman went online to do research before heading back to her primary care doctor. With a detailed chart of the symptoms in hand, she told her doctor that she thought she had Cushing’s disease.
“The doctor said, ‘So, you’ve been self- diagnosing yourself on the Internet?'” Holman recalled.
Months passed, and her health did not improve, so Holman decided to change doctors – a decision she would later be grateful for. A doctor at a major hospital discovered a large tumor on her adrenal gland.
“This is the first I heard about cancer,” she remembers.
Ultimately, Holman was diagnosed with adrenal cancer and the cancerous tumor was the root cause of her symptoms. She underwent surgery to have the tumor removed and has undergone more procedures since to remove lesions elsewhere. Since Holman’s cancer is stage four, she must continue to undergo routine scans.
“I did not know that the initial hair loss was really my body trying to tell me something,” Holman said. “I had so much energy that I didn’t think I was sick.”
Shockingly, Holman is not alone. In May, 2013 a Kaiser Health News writer Sandra G. Boodman reported on the problems of medical errors. She wrote, “Diagnoses that are missed, incorrect or delayed are believed to affect 10 to 20 percent of cases, far exceeding drug errors and surgery on the wrong patient or body part, both of which have received considerably more attention.”
Holman is sharing her story not to scare anyone – but encourage them to become their own health advocate, fighting for their rights and needs.
Here are a few simple ways you can get started:
1. Set the agenda for the doctor’s visit.
Bring a notebook and brainstorm three or four questions that you have before your doctor’s appointment. This list will help you stay focused and ensure you cover everything you need to address. Use your notebook to also take notes. Writing down the information can help you remember what was discussed and things you might want to look into further in the future.
2. Consider a decision free zone.
While time can be of the essence in many health situations, consider taking some time to weight your options. Ask your doctor if a decision has to be made now. If you receive news that is unexpected, you may need some time to process everything you have told. Even if you can have one day to let things sink in and consider all of your options, it can help you to make a more informed, level-headed decision.
3. Don’t be afraid.
Don’t forget, your doctor works for you. So don’t hesitate to ask about their experience. If you have a rare illness, ask your doctor about how many patients like yourself they have treated. And be sure to ask about all possible treatments so you can review and consider all of your options.
Also, don’t be afraid of judgment. Be sure to share all of your symptoms. It is difficult for your doctor to make an accurate diagnosis if they do not know everything you are experiencing.
4. Remember that you can always appeal.
Due to complex medical insurance policies, some procedures may not be covered initially by your insurance. When my late husband needed a very costly scan, our insurance initially denied it. I asked for an appeal and asked his doctor wrote a letter of support. The scan was covered. So if you think the treatment or test could benefit you, remember you do have the option to appeal to your insurance company and have them re-consider the request.
5. Trust your gut.
While doctors are talented and well-trained – you know your body best. Speak up if something doesn’t seem right and insist that something be done.
Your life is precious. Swallow your pride and fear. Be brave and ask for what you need.
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