Requesting documentation from medical providers improves my care
How I respond when doctors doubt my symptoms
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Rare and chronic diseases aren’t always visible. Sometimes, it can be hard for friends and family to understand that you’re very sick if you’re not in the hospital or doubled over in pain. But what happens when medical professionals have the same doubts?
In online support groups, I’ve seen many patients write about their experiences with healthcare providers who don’t believe they’re sick, refuse to consider a potential diagnosis, or are unwilling to run patient-requested labs or tests.
With more than 10,000 rare illnesses identified, it can take years to nail down a diagnosis. An uncooperative doctor only makes the process harder.
It’s crucial to have a medical team that’s knowledgeable, proactive, intrigued, dedicated, and willing to listen to a patient’s symptoms and concerns. But we as patients can also advocate for ourselves and make our voices heard.
Overcoming objections
It can be difficult and unnerving to approach a doctor with health concerns, especially if you have no idea what is making you unwell, so it’s a tremendous disservice not to be taken seriously. This can delay treatment and result in worsening illness, the development of comorbidities, and anxiety about seeking medical care.
I have four rare autoimmune diseases, including immune thrombocytopenia (ITP), as well as a connective tissue disorder and nearly two dozen comorbidities. While my ITP diagnosis went smoothly, I’ve definitely crossed paths with a few medical professionals who expressed doubts about what I told them.
Over the years, I have found that one simple sentence eliminates the problem of medical professionals not wanting to consider a potential diagnosis. I say: “I would like it documented in my chart that you’ve refused to test/investigate/pursue the symptoms or issue I’ve come to you about.”
That single request has completely changed my medical treatment. I am taken much more seriously, and there’s no arguing, no pleading, no feeling belittled or unheard.
The best weapons you can have during a long battle with a chronic illness are confidence, consistency, and knowledge of your rights as a patient. And if your medical team isn’t willing to work with you, then always document that.
Everyone deserves to be seen and heard.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
