Being labeled

I don’t know about other physicians/healthcare providers, but there are certain words that I see on patient’s medical chart that strike fear in my heart.  Here is a sample list:

  • Fibromyalgia
  • Irritable Bowel Syndrome
  • Atypical Chest Pain
  • Chronic Fatigue Syndrome
  • Chronic Pelvic Pain

These illnesses fall into a category known as  “Functional Disorders”, which means, according to the medical dictionary, that it is a disorder with no known or detectable anatomical or physiological basis to explain the symptoms.

It is not uncommon for patients who have functional disorders to go from doctor to doctor, getting different opinions, blood draws, imaging studies, and end up with no clear answer.  In my experience, I find that the patients who carry these diagnoses in their charts often tend to be unhappy/frustrated with the lack of an answer from their extensive medical evaluations.  This subsequently leads to more negative/poor quality interactions with their medical team.

The question is, once that label of a functional disorder is officially put onto the patient’s problem list, does it immediately cause some bias in how someone is treated?  I’ll be the first to confess that yes, it does affect the way that I think about a person.  The apprehension that I experience is directly related to the limitations in medical diagnosis/treatment.  So when I see a patient with one of these “labels”, I can’t help but cringe a little bit inside, even if I have never ever met the person before.

On the other hand, maybe having a label for an illness can be more liberating for a patient.  Perhaps it gives the patient a sense of validation, even if there are limited treatment options.  It is someone saying, “Yes, you are experiencing this pain and discomfort.  I don’t know what causes it, but let’s move on and try to focus on the things that make you better.”

I know that for myself, if I were to ever be in the situation where I had some mysterious inexplicable symptoms, I would hate to be labeled with a functional disorder for fear of others viewing me in a certain way.  Sometimes I wonder, is it better to be officially labeled with a functional disorder or to go on through life endlessly searching for a physiologic reason or structural abnormality and being told that there’s “nothing wrong and it’s all in your head”?

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4 thoughts on “Being labeled

  1. A name. Give me a name so I know where my battle begins and I don’t feel as though I’m lost in a foggy swamp. For the past year or so my mother has had problems with her iron-so much so that she’s had six iron infusions and two blood transfusions (I think I used the right words). She’ll have her blood drawn, the doctor will call & tell her to go immediately to the hospital then the next week be told they find nothing wrong. Rinse & Repeat.

    Having a “name”, a noun that we can fight, would be much better than “I don’t knows”.

  2. I want to share some thoughts… because I’ve given this a lot of thought from being close to people with “functional disorders.” I think the problem lies in our assumption that only a “physiologic reason or structural abnormality” could satisfyingly explain negative and undesirable symptoms. I also find the phrase “there’s nothing wrong and it’s all in your head” to be problematic. The head is a big part of our bodies, and in my opinion, I don’t think that just because the root of a problem seems to be coming from our “heads,” we should conclude that “there’s nothing wrong.” I really feel like better care in regard to these disorders will ultimately lie in a breaking down of the stigmas associated with addressing the mental, spiritual, and emotional causes for physical pain… so that they can be examined alongside the physiological causes, and people can find the validation along with the relief they seek when they go to a doctor.

    I also want to thank you for sharing this… I really appreciate the empathy and curiosity in your words 🙂

    • Thanks for the feedback Lynnette! As physicians, we go through years and years of training, so ingrained with “evidence-based” stuff/science, so it’s often easy to forget what you mentioned, addressing the mental/spiritual/emotional causes for the pain. Much easier in a busy overbooked clinic day to glance through labs/studies and say, “There’s nothing abnormal here!” then to actually have to sit down and think/talk about deeper reasons. =)

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