Treat my symptoms, please…but don’t patronize me

Treat my symptoms, please…but don’t patronize me

Our symptoms and histories aren’t two second sound bites. We have complicated health histories and they matter, both for us to be heard and also for you to get a full and complete picture.2 min


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Dear ER and Urgent Care Doctor,

We know treating #MyositisWarriors in an emergency situation can be difficult, especially since you are encountering us in moments of stress. Our symptoms are complicated. They don’t always respond to medications the way you expect. They don’t match your medical books or advice: “When you hear hoofbeats, think horses, not zebras.”

MSU’s Myositis Awareness theme in 2017 was, “Sometimes zebras have spots!” for this very reason. We are hard to diagnose, hard to treat, and hard to keep stable. Being a patient with alternating symptoms feels surreal – but we aren’t making it up! We aren’t attention seeking, we aren’t drug seeking, we are also not psycho-somatic, and we aren’t problem patients, even if we are difficult – medically! We are seeking answers, effective treatments, and relief from unending questions, fears of the unknown, and pain.

Listen to us, our symptoms and histories aren’t two second sound bites. We have complicated health histories and they matter, both for us to be heard and also for you to get a full and complete picture. Believe us when we tell you what is going on. Our bodies are anomalies. We’d much rather get attention for our personalities. We are full and complete humans when we are not lying in ER beds (with lots of germs floating in the air just waiting to be snatched up by our immune-compromised bodies)!

We are seeking answers, effective treatments, and relief from unending questions, fears of the unknown, and pain.

One of the most demoralizing and condescending things we can hear from you is, “would getting an XYZ test put your mind at ease?” No, we want you to do your job: consult with others who know more about chronic illness, call in a rheumatologist, neurologist, whatever doctor is necessary to help you understand our underlying condition, and then order the necessary tests for whatever is happening, acutely, while we are in front of you…but don’t just do test to placate us.

Myositis patients, donate plasma

Do what’s medically necessary to ensure that our disease has not progressed, is causing a sudden failure of an organ, or is unexpectedly in some emergent status. Do what is indicated to give us medical clearance. Don’t do a test to patronize us. Do what’s necessary to tell me that my body is safe. Don’t treat me like a hypochondriac who wants tests for testing’s sake. Tell me what needs to be done to know that the newly exhibited symptoms are not an indication of immediately dangerous disease progression.

We know you can’t solve all of the problems in a 1-5 hour ER or Urgent Care visit, but you can be respectful and kind, knowing that having a chronic illness is scary, and new or worsening symptoms compounds it enormously. It’s infuriating on top of being sick to be appeased, or, conversely, treated like we are malingering.

Myositis, autoimmune disease, and other chronic illnesses as well, are unpredictable and unrelenting. Be our advocate. Please don’t add to our problems by being disrespectful.

But don’t take our word for it…

Here are a couple of pieces about misdiagnosis of Fibromyalgia and how people with chronic pain and fibromyalgia are assessed for malingering (fibromyalgia is one of the common overlaps of myositis):

https://www.sciencedirect.com/science/article/pii/S1889186113700015

https://www.themedicalcareblog.com/the-curious-case-of-fibromyalgia-overdiagnosed-underdiagnosed-and-misunderstood/


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Myositis Support

Myositis Support and Understanding Association (MSU) is a patient-led, patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community! MSU was founded by myositis patients for myositis patients and caregivers and offers education, various support options, advocacy, clinical trial matching, financial assistance, and access to research. Visit our comprehensive myositis website at Understandingmyositis.org.

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