12 Suggestions for Advocating for Yourself as a Patient

When living with chronic medical conditions, one must advocate for their own health – actually, their own life. In my case I have several conditions which are rare or more difficult to diagnose and challenge doctors’ knowledge of medicine. These diagnosis include dysautonomia, Sjögren’s syndrome, Ehlers-Danlos syndrome and mitochondria dysfunction.

What these conditions have  in common is they often  present as illnesses that cannot be seen outwardly (invisible) but result in varied symptoms for the patient. Symptoms include headaches, joint and overall pain, digestive issues, breathing difficulties, unstable heart rate and blood pressure, allergies, exhaustion and eye problems. The list goes on.

Advocate: to speak, plead or argue in favor of; a supporter or defender. 

Advocacy is vital for survival. We must voice our concerns and encourage medical personnel to look in different directions for treatment. We are not your typical patient visit in which an infection or other ailment is treated and the patient recovers. Rather, each medical problem often produces a domino effect of issues. An illness can spiral and cause dizziness, dehydration and exhaustion. Some medications can interfere with our bodies and conditions. What takes a healthy person days to recover from may take us weeks.

I learned once again recently that I must advocate for myself – an action which is difficult when feeling crummy. Upon experiencing jarring, crushing pain in my stomach/back on two separate occasions, I knew something was wrong. The pain took my breath away and made me weak and wobbly.

During the first incident, I called the doctor and was told by a nurse to take nausea medicine. Thankfully the pain was short-term and I could rest.

Three days later pain erupted (on a Friday afternoon). I was left lying flat on the bed trying to remember how to breathe as the stabbing pain shot throughout my torso. Out of desperation I called the doctor and the same nurse (who is oftentimes a poor listener and rude) took my information. I wanted to be seen but instead was told I would receive a call back.

I could not move and took refuge in the small breaks between pain attacks. About an hour later I called the doctor again and the nurse rattled off all these things to do if I did not improve. I know a scan of some sort was mentioned but later realized that one cannot just walk in to a radiology practice and receive such a test; a doctor referral is necessary.

After pleading with this nurse to get me in with the doctor, as the pain was off the charts, she declined and I hung up. And then I cried out of sheer frustration at this nurse’s behavior.

I was seeking help from the very place I knew to go and was turned away. After living through a few more attacks I knew the emergency room was imminent.

A five-hour emergency room visit produced no answers. After fluids, nausea medications, a CT scan and blood and urine tests, I was told there was slight inflammation and to follow-up with the doctor.

After two days of resting I read the report from the ER. To my surprise, several tests showed abnormal results. No mention of this was given at the hospital. I researched these tests and knew the results could not be ignored. I would need to contact the doctor and risk the chance of having to speak to the nurse who had turned me away.

Instead I composed an email through the patient portal. It explained the two episodes, my being unable to see the doctor, the emergency room visit and the blood and urine results that were not disclosed to me. (Note: If I had felt better I would have inquired at the hospital about my labs. Regardless, someone should have read me those results.)

Since then my blood work normalized – after four blood draws. I have seen my doctor, who theorized that a virus hit me harder than it would a healthier person, causing intestinal spasms. If spasms occur again I will be treated with medications.

It took about three weeks to return to my baseline health. Living with chronic conditions, I know I will be challenged again to advocate for my health. Here are suggestions on how to advocate for yourself:

1. If possible, bring someone with you to the emergency room or doctor visit. Instruct that person on what questions to ask, including: “What are the results of the tests performed?” and “Which symptoms could arise that could warrant a return trip?”

2. Update and carry a detailed list of medications in your wallet at all times.

3. Carry a sheet with diagnoses, dates and which specialists treat each condition.

4. Ask for access to your patient portal so you can review notes/results from the visit.

5. Make a follow-up appointment with your primary care doctor to evaluate your condition, review information and see if additional treatment is necessary.

6. Realize that advocating can be difficult, but is necessary to receive the best possible treatment.

7. Don’t give up, even if discouraged.

8. Forgive yourself if you make mistakes, cry or forget to ask a question. We all make mistakes.

9. Learn what you can about your condition to be as educated as possible.

10. Review the emergency room paperwork for valuable information.

11. If treated poorly, state that on the hospital survey and/or call the patient relation’s person at the facility.

12. Ask others with similar medical problems for recommendations on good medical treatment and personnel.

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Thinkstock photo via monkeybusinessimages.