How to effectively communicate with healthcare providers
One way is to better explain the frequency and severity of my symptoms
Whenever I get together with my chronic illness friends — especially fellow hypoparathyroidism warriors — we always end up sharing horror stories about the times we needed treatment and couldn’t get it. Some of my favorite advice about advocating for my health comes from the Hypoparathyroidism Association’s 2023 International Hypoparathyroidism Conference.
Endocrinologist Elena Christofides’ webinar, titled “Patient-focused guide to tracking your disease,” contained tips for explaining symptoms to healthcare providers and what to do in both a clinical and hospital setting if a patient isn’t receiving the care they need.
Her advice has made me a better self-advocate. Because I have multiple diagnosed mental health disorders, including generalized anxiety and severe panic disorder, many of my symptoms are often disregarded as “just anxiety.” I intimately know what anxiety feels like, as well as the effects panic has on my body. Therefore, I know when something other than that is wrong.
But how do I explain that to a medical professional who is not in my body?
I look to the webinar’s advice and focus on not downplaying or disregarding my symptoms, but instead explaining their frequency and severity and discussing my fears.
For example, I’m recovering from a pinched nerve that caused vertigo. Initially, I had told my practitioners that my arm hurt and I was dizzy, but that didn’t explain the severity of it, nor how it affected my life. The pain could’ve been explained away as a muscle spasm, and the dizziness as anxiety.
Instead, I should’ve explained that I have pain and weakness in my left arm, and pain in my neck and shoulder. My arm weakness and pain are so bad that I’m unable to type or hold my phone with my left hand, which interferes with my job. As a result, I’ve had to delay multiple deadlines. My vertigo is serious enough that I’m afraid to drive because I can’t easily do evasive maneuvers.
For the first two weeks of my pain, I used the first explanation. But on week three, I regrouped and explained my symptoms more thoroughly, using my second example above. This resulted in a more specific diagnosis, which led to better treatment and a vast improvement in my symptoms.
Picking up the phone
Christofides’ advice also covers what to do when emergency room care is lacking, based on the U.S. hospital system. I, along with many patients with hypopara, know that going to the hospital for intravenous calcium during a hypocalcemia episode (low blood calcium) can turn into a grueling fight. Instead of saying, “My chest is tight,” which can be brushed off as anxiety, I should say, “I have hypopara, which is making my chest tight because my calcium is too low. I will start struggling to breathe because of a bronchospasm if I don’t receive intravenous calcium soon.”
Hopefully, after communicating the severity of my symptoms in a way that’s easy for a healthcare provider to understand, I will get the calcium that I desperately need. But sometimes, even this doesn’t work. Christofides shared that if explaining my symptoms and fears doesn’t get me the emergency treatment I need, my next line of defense is reaching out to the hospital operator via my phone.
In this situation, I would call the hospital operator and ask for the patient hotline, saying, “I am in the hospital, and no one is listening to me. I need a nurse manager or a patient advocate. I am in danger of having a [serious symptom, such as seizure, bronchospasm, or going into cardiac arrest] if I don’t get treatment.”
By sharing that I need help and the very real and life-threatening symptoms I’m experiencing as a result of hypopara, the operator can make sure my request for help is expedited to the right person. After my call, the hospital should send a nurse manager or a patient advocate to help me advocate for treatment.
I’ve been lucky enough to not need to call the hospital operator since I’ve learned this advice, but it’s something I keep handy for an emergency situation and share with other chronically ill friends. It takes practice to remember to fully share how my symptoms affect my life, but it’s been worth it. I hope that other patients feel as empowered as I do using these tips during future healthcare visits.
Note: Hypoparathyroidism News is strictly a news and information website about the disease. 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 another 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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