Good health is one of life’s most precious gifts. Unfortunately, it’s a gift many of us take for granted until we have to fight to keep it.
That fight, though, isn’t just an internal one. All too often, patients find themselves battling for a return to health on two fronts. They must fight the illness. But they also must fight to be heard, to be understood, to be believed.
When you are facing sickness, perhaps the last thing you feel able or willing to do is to wage a war of advocacy for yourself. Nevertheless, it’s a fight that you must engage in. No one knows your body better than you. No one will face the consequences, for good or for ill, of the treatment you receive more than you will.
You deserve quality care and, studies show, patients who self-advocate are more likely to be satisfied with their treatment and to get well. We’ll show you why it is so important to advocate for your own needs as a patient, and we’ll provide some tips to help you do it effectively.
Misdiagnosis and Inappropriate Treatment
One of the most significant dangers facing patients today is the risk of misdiagnosis or delayed diagnosis. According to recent estimates, as many as 12 million people are misdiagnosed each year, with as many as 80,000 dying from complications related to the errors.
The causes of incorrect or delayed diagnosis are many. They may result from the simple time constraints so many healthcare providers are facing, especially in this era of growing patient demand and a worsening shortage of healthcare workers.
Unfortunately, these issues may also derive from unconscious biases on the part of the caregiver. Unconscious and even conscious biases, including gender and age-related biases, may compromise the quality of care patients receive. Such biases may cause providers to fail to recognise the symptoms of a heart attack in women or may prompt physicians to curtail the treatment of older patients based on “quality of life” assessments alone.
What to Do
One of the most important things that you can do if you are facing health challenges and feel as if your care provider is not treating you effectively is to communicate, communicate, communicate. Medical diagnoses are as much an art as they are a science, and so the more information your caregiver has, the better.
So, before your next medical appointment, start making copious notes about your symptoms. Whenever you feel something isn’t quite right, write it down and be very specific. Note the time and what you had been doing in the minutes and hours before the onset of symptoms. Describe exactly what the symptoms feel like, how long they last, and how you feel afterwards.
If you do this every time symptoms appear for several consecutive days, then your doctor should have enough information from your journal either to make an accurate diagnosis or at least to order the appropriate tests. After all, many illnesses have a host of overlapping, non-specific symptoms, and it often requires a process of elimination before the appropriate diagnosis is made. A comprehensive symptom journal can speed that process significantly.
Consider, for example, gastroesophageal reflux disease (GERD). This common disorder affects millions of people worldwide, and yet its symptoms can be very vague and varied, ranging from the expected gastrointestinal (GI) distress to chest tightness to ear and throat pain. Left untreated, though, GERD can lead to potentially life-threatening complications, from cancer to severe GI bleeding.
Bring in Reinforcements
If you find yourself in the position of fighting to be heard and understood by your healthcare provider, though, you may worry about your ability to make your caregiver listen. You may fear that a symptom journal may be too much of an imposition on their time.
But remember: Your doctors and nurses work for you. They are on your team, and it is their job, under professional oath, to do their utmost to help you enjoy the good health and quality of life you deserve.
So if your healthcare provider does not seem to have the time or willingness to listen, then you must insist that they do. Of course, that’s not always easy, especially when so much of your energy is taken by your condition. That’s why it’s often a good idea to bring a trusted friend or family member with you to your appointments. Charge them with asking questions, making notes, and speaking for and with you.
Not only will this help you to remember important information taken from the appointment, but it will also likely produce a more fruitful outcome. You’ll also have the comfort, of course, of meeting with your doctor with your support system right by your side.
And, very importantly, your loved one can provide a more objective view of your caregiver, helping you to determine if and when it’s time to find another doctor. If you do decide to switch doctors, finding one who offers telehealth services can help to ensure that you can consult with your health team online most anytime you need them, from the safety and comfort of your home.
Advocating for your own health is by no means easy, but it is most assuredly a fight worth waging. You deserve the best of care, but sometimes your caregiver will need a bit of a push to provide the focused attention you need. With strong communication, though, and the support of loved ones, self-advocacy can be highly effective in setting you on the right road to recovery!