Earlier this year, I had my first particularly awful experience with a medical professional. I was experiencing jolt-like pain in the brain, and the sensation would leave me paralyzed for seconds at a time. It was an unfamiliar experience, and I knew in my gut that it wasn't good. So my husband and I went to urgent care; they sent us to a nearby hospital because of its severity. While the medical assistants and nurses were wonderful, the doctor was cold and unconvinced that anything was wrong. His questioning felt a lot like gaslighting; I was beginning to think I was crazy and eventually broke down in tears. I just wanted someone to listen to my concerns and help me find an explanation for my anguish.
Though it was my first time receiving poor service, I knew I wasn't unique. According to the American Bar Association, Black patients — especially Black women — are less likely to receive quality treatment or take their symptoms seriously. I had to learn the hard way to be my own advocate and understand the power of equipping myself with information and grit.
6 actions you can take to protect yourself
Before, during, and after the appointment. As a patient, it's easy to feel like your role is to sit down and be quiet while the doctor is talking. Although active listening is key to any healing process, asking questions and staying curious is just as important.
What questions should I be asking?
Canadian Health Advocates suggests the following five questions to start:
- What is my main problem?
- What do I need to do?
- Why do I need to do this?
- What should I expect?
- When should I follow up?
Based on personal experience, I would advise patients to also ask about why a health problem has emerged, how a doctor came to their conclusion, and what resources are available to me (e.g., support groups, hotlines, specialists, etc.)
Do your own research
There's a line between being informed and being a hypochondriac, but I urge you to research your symptoms so that you can better articulate your pain and eliminate irrelevant possibilities.
But won't that annoy my doctor?
Quite the opposite. Thuasne says, "41% of online diagnosers say a medical professional confirmed their diagnosis. Researching your own condition does not mean that you think you know more than your doctor, but it gives you empowerment to know when to go into the office and give your doctor the best information you can regarding your condition. This will usually result in a better diagnosis and overall healing journey for you."
Bring a trusted loved one
When we think there could be something more serious with our bodies, it can be a scary and lonely feeling. For some of us (myself included), we tend to withdraw when we're stressed or fearful. Consider being a friend, spouse, or family member to your next appointment. "[A friend] can help decipher the information and take notes during the visit. You can also ask your doctor if it is okay to record the conversation. This will make it easier for you to have all the necessary information."
Get a second opinion
When you're facing the prospect of a severe diagnosis, it's important to get a second opinion. Sure, there's the chance that the initial diagnosis is incorrect or misinformed, but there are additional benefits to socializing your symptoms. The second set of eyes and ears could introduce you to someone more equipped to help you. Further, they could offer more options for treatment and recovery.
You don't necessarily need to source a second opinion in secret. You're well within your right and scope as a patient to ask your doctor. Won't it be awkward? Not at all. A trained professional should want you to get the help you deserve. Here are some talking points to get you started. "Before we begin treatment, I would like to confirm this diagnosis with a second opinion. Just to have all my bases covered. Is there someone you would recommend?
Keep your own records
We've all heard the saying, "get it in writing," and advocating for yourself is no different. Be diligent and keep both physical and digital records made available to you. And ensure that you're taking your own notes during appointments as well. Per Sharecare, you'll want to keep your recordings in a safe place for a considerable amount of time. "Washington state Attorney General Rob McKenna recommends keeping medical bills for at least one year in case there's a reimbursement dispute. Some experts suggest keeping other records for five years after the end of treatment. Be sure to shred — not just toss — anything with your personal information, such as your health insurance ID number, to help prevent medical identity theft by trash-picking crooks."
Trust your gut
One of the best ways to advocate for yourself is to trust yourself. I believe patients, especially women, can worry that we're overreacting or stepping out of bounds when we have the urge to follow a "bad feeling." Joanna Montgomery, a contributor for HuffPost and self-described "cancer thriver," shares her two cents. "You should be able to trust your healthcare provider, unequivocally. He or she should make you feel totally comfortable, and you should never leave an appointment feeling rushed or brushed off or with unanswered questions. If this isn't consistently the case, find someone who does make you feel comfortable."
When it's hard to advocate for yourself, remember this; it is you who is enduring pain, it is you who will have to see the journey through, so it will often be you advocating most for yourself.