Self-Advocacy vs Self-Diagnosis? The Waiting Room!

Oh my gosh! My right shoulder and arm have been feeling oddly numb and “heavy-ish” for over a week, though I have no pain. The sensation came on suddenly upon waking one morning. It is difficult to describe this vague persistent “discomfort”. Being right-handed, this has interfered a bit with a variety of regular activities. So far, I have no definitive answer about what the problem is and how to treat it. Emotionally upset, my confidence is shaken when considering future commitments.

My mind races. I get anxious and wonder “What will happen next?” Am I having a heart problem? On the verge of a stroke? Muscle over-use syndrome? Nerve impingement in my shoulder or neck? A brain tumor? Multiple Sclerosis? (Is this the end?)

Am I right in saying most of us have gone through similar thought processes about our health at one time or another? Have you ever driven yourself crazy with the “what ifs”? Even if we have a medical appointment or tests pending, WAITING (for the appointment, in the waiting room to see the doctor, or for the test results) makes our minds even more imaginative.

A Funny Story: Many years ago (before the Internet), I wrote a humorous short story called “The Waiting Room”. It illustrates this kind of scenario perfectly! The story, exactly as written, can be read on a scanned pdf. (Click here to read “The Waiting Room” by Paula B Smith ^*1). Not much has changed, though a few references will date it. If you are like me in the scene I started with above, you should get a laugh!

My original idea for this blog was to introduce that story from the archives, but as I started writing, I realized there are some other important things to consider here. 

Let’s get serious and think about self-advocacy versus self-diagnosis.

Self-diagnosis means we identify or diagnose our medical symptoms / conditions using available tools (including our own prior experiences and family medical history). 

Notice, I used self-diagnosing to explain my right arm / shoulder problem in the scenario above?

Before the personal computer and Internet was available for everyday use, we researched known medical conditions in our home encyclopedias, at the library, in the newspaper or magazines, by talking to friends or relatives about similar experiences, asking for remedies for symptoms through our local pharmacy, or using our wild imagination to make ourselves crazy before scheduling an appointment with our primary physicians. Even after seeing the doctor, if we didn’t believe or trust them, we may have gone for second opinions or continued our research until our minds agreed, “This fits!”.

Since the Internet became more widely used and our own medical charts are stored in provider portals on the web, there is so much more information out there to weed through. We have hospitals, specialty practices, and medical teaching colleges / universities openly sharing information about medical conditions, research studies, symptoms and treatment. There are social media posts, like-minded peer groups, medical information blogs, videos on YouTube and TikTok, podcasts, and other resources put out there by anyone who decides to share (professional or layman)^*2.

We are looking for more answers on the Internet before seeing medical professionals. Here are a several articles I found suggesting a higher prominence of self-diagnosis over the past few years, especially for acute symptoms:

• National Library of Medicine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6996753/
• Bridgeable: https://www.bridgeable.com/ideas/the-rising-tide-of-self-diagnosis/
• Harvard Health Letter: https://www.health.harvard.edu/staying-healthy/harvard-study-internet-searches-sometimes-lead-to-the-right-diagnosis

Our minds may be making mountains out of molehills (or maybe not…)

How do we know the information we read, watch, and hear is accurate? Should self-diagnosis replace seeing a medical specialist?

In the positive sense, if we are good at collecting and comparing information from many sources, attempts at self-diagnoses can lead us to start with home remedies for a few days before calling a medical professional. Sometimes, self-diagnosis can lead us to understand which kind of medical professional to begin with for a firm diagnosis and treatment. That education may also allow us to communicate more clearly and assert what we need from a provider.

In the negative sense, if our minds do that “thing” that I described in my beginning scenario, maybe knowing “too much” can feed into the anxiety component! It’s okay to arm ourselves with understanding and education. Just remember, most of us don’t have the education, hours of training, experience, and practice that medical (or medical alternative) professionals have.

There are folks who replace seeing a medical specialist because they have no medical insurance, can’t afford treatment, and may be unable to find transportation for medical office visits. These folks may choose self-diagnosis and self-treatment instead of traditional diagnosis and treatment.  Some may be unable or unwilling to follow through with medical advice or treatment due to various adverse circumstances. If a person is unable to advocate for themselves, having someone to advocate for them may be helpful,

Self-advocacy is one of the best ways to improve the outcomes of our health conditions. This includes self-awareness and education, making good health choices, selecting trustworthy providers, building relationships with a health care team, and clearly communicating our preferences or concerns.

We are usually the first to know when something does not feel right in our bodies. It’s up to us to act or communicate when something seems off. Often, by the time someone else notices -- things usually have gotten worse.

Here are 8 suggestions for self-advocating:  (These are based on my own experiences as self-advocator and advocator for my child, parents, and husband):

1. Start with common sense! Develop healthy physical and mental habits like washing your hands regularly, getting enough sleep, eating well-rounded meals, drinking enough fluids, avoiding close contact with others exhibiting obvious symptoms of communicable illness (cough, sneezing, runny nose, etc.), taking a break when needed, or asking support of a friend, family member, or mental health counselor.

2. Know what’s normal for you: Stay tuned in and listen to your body. When something is out of tune, take notes. What’s different from normal? Can it be explained logically? (If we are tired all the time, is it because we never stop to rest and try to stay energized after 4 hours of sleep with tons of caffeine?) Try a little self-care for a few days and see if the problem improves. If not, it’s worth seeking some professional input.

3. Maintain a basic understanding of your own existing (and general medical) conditions: Start with your personal normal (as in bullet #2) and educate yourself on any conditions you are already living with (like diabetes, high blood pressure, or arthritis). Stay aware of what may result if you aren’t taking good care of yourself. Learn about new trains of thought or strides in treatment and medications for your conditions. Can we improve the potential for significant severity and secondary illnesses with lifestyle or diet changes? Read up on other common problems based on your family history or general age group (cancer? heart conditions? mental illness?). Follow through with recommended screenings (colonoscopies, mammograms, blood tests, etc.). Understand what symptoms / conditions warrant immediate medical action (like heart attack, stroke, extreme blood loss, sudden mental status changes, etc.)

4. Create a written log when experiencing an unexpected change: Medical professionals will ask you specific questions. Having a detailed description of what's happening on hand will help them pin down the best course of action. Include: symptoms (such as pain / severity of pain, numbness, redness, fever, yellowing skin, unusual paleness, unexpected weight loss / sudden weight gain), location of symptoms on your body, when did the change start, how long has it lasted, persistence of symptoms through their duration, activities or conditions that intensify symptoms and those that improve them. What have you tried to alleviate the symptoms so far. Has anything been successful? How are these symptoms affecting your ability to carry out everyday activities (work, housekeeping, self-care, driving, etc.)

5. Maintain a relationship with at least a primary care provider: This provider will be the person you can talk to or see first. As an established patient, they can get you on their schedule quickly for more urgent visits. A primary provider can refer you to a specialist and advocate for the earliest appointment. Your primary provider likely has a 24-hour call line where you might ask questions of an on-call doctor, physician’s assistant, nurse practitioner, registered nurse, or another staff-member to help you determine what to do next. Don’t hesitate to call 911 if you need immediate help!

6. Review your own medical records and test results: These days, most records are maintained on the internet through your provider’s (or major medical facility’s) web portal. You will often receive lab test results, pathology and image reports before your medical provider sees and responds to them. Some medical record portals include links to more detailed general information about tests, medical and technical language. Help your provider maintain accurate records by updating medication changes, procedures / tests / treatment completed at other facilities, and clearing errors in your record. Make notes, write down questions to ask, and what you’d like explained from the record. If you see something totally incorrect (i.e. missed documentation of an allergy, your records mixed up with another patient’s, etc.) speak up! Post a message to your provider if the chart application allows.

7. Ask more questions or change providers if a diagnosis or suggested treatment plan doesn’t seem right: Does the care team have all relevant information from us? Are they overlooking some possibility that could make a difference in our care? 

Here's a true personal example.  Long ago, I felt a lump in my throat. I could feel it using my fingers, when I swallowed, and how it affected my singing voice. The first doctor visited told me I had "hysterical choking". That was not an appropriate answer for me! I sought another provider who could physically feel the same lump. He identified it as a thyroid nodule. We tried thyroid hormone replacement medicine to stop it from growing, but that didn't work. Eventually we surgically removed the lesion. Luckily, the final pathology showed "benign adenoma".  It would have kept growing and interfering with swallowing, singing, or other neck structures if we hadn't removed the nodule.

Sometimes we have different visions of how to best address a problem. Our doctor may not have the same mindset. If we'd rather start with less-invasive options (dietary changes, healing foods, exercises or physical therapy, modifying tasks) and our professional care team is not on the same wavelength, we might work more successfully with someone who aligns with our preferences. If one method doesn't work, there are many different options, including new medicines and procedural strides. Select providers who listen, consider your thoughts, and include you in decisionmaking.

8. Be prepared for your appointments: Create a list of questions to discuss at your professional visit. These days, providers often have only 15-20 minute allowable face-time during appointments. Stick to the subject or the specific reason for your visit. (As a detailed, descriptive, and imaginative writer, sometimes I have a difficult time with this one 😊.) When we can't stay on track, we might be required to make another appointment with our provider to address the extras on our lists. General questions or points of discussion might include: medication dosage or refills, next actions, understanding test results and what you can do about abnormal readings, referrals to specialists, when to have an immunizations or health screenings. Ask how much time you should allow on your own calendar when scheduling appointments. If the professional has time to be thorough, there is no sense in having to hurry off to another commitment. It is possible to accomplish more at a visit for time saving on both ends (provider might administer your flu shot, draw blood, or take x-rays in the office).  

I hope this discussion has been helpful!  Do you have any related experiences or tips to add? (Any “Waiting Room” stories of your own?)

(If you didn’t get a chance to read “The Waiting Room” before you got to this point, here’s the link, again.)

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Footnotes:

^{*1. My last name was “Smith” when I authored "The Waiting Room"
*2. Full disclosure, as a writer (not a medical professional - though some of my education and work experience gave me more medical knowledge than the average person) I am conveying information based on personal experiences.}

^{Aknowledgement : "Waiting Room" photo is courtesy of Unsplash.com - getty-images-msyQNw7AfJ0-unsplash}