23 year old Lisa has been diagnosed with “Facial Psoriasis”. Facial psoriasis is a skin disease that causes persistent, thickened, red, dry patches on the face. Lisa’s psoriasis has been very difficult to treat and is now spreading to other parts of her body. She says she feels like the disease has taken over her life and taken away everything that mattered to her. Last year, her doctor suggested she take part in a clinical trial testing a new drug. Desperate for relief, she signed up for the trial. Unfortunately, she suffered a side effect of the medication. She is now prone to recurrent chest infections, and repents making a hasty decision. She is scared to step out of her house now, because she thinks she’ll die of Covid-19 infection. Lisa later confessed to me that she just wasn’t comfortable questioning her doctor. This is a story of why it’s important to own your health and to be your best healthcare advocate.
When I first spoke to Lisa, I was taken aback by how the disease had affected a young beautiful girl both physically and emotionally. Most serious diagnoses take a toll on every aspect of a person’s life. Unfortunately, many of us fail to realize this. The diagnosis itself renders the person hopeless, scared and confused. Before they know it, their personal and professional life gets affected too.
When I asked Lisa if she had asked about possible adverse effects of the new drug, she said she had. Yet, she didn’t really understand it because it was medical terminology that didn’t sound too serious. Lisa had a made a big decision without understanding what she was signing up for. She said she agreed to participate in the program because her doctor thought she was a good candidate for the trial, and it was worth trying. Being her best healthcare advocate was not something that came naturally to her.
As a health advocate myself, I cannot stress how important it is for people to make informed decisions when it comes to their own health. Health care providers are required to make medical decisions in your best interest, but what if the proposed action plan doesn’t align with your personal values and beliefs? What if it isn’t compatible with your lifestyle? What if it involves something you are not comfortable with? You’ll never know unless you ask the right questions at the right time. That’s what I mean when I encourage my clients to become their best healthcare advocate.
To make the most of your time with a medical specialist, it is important to plan and be prepared for the appointment. Asking questions about your diagnosis, treatment plan, and medications can improve the quality and effectiveness of health care you receive.
Think about your goal for the appointment. Do you want to discuss a health issue? Do you want to change a medication? Do you want to learn about alternative treatment options? Do you want to learn more about a test or a test result? Prioritize your concerns and make a list of questions for your doctor.
Think about questions you might want to ask about a test. What will the test accomplish? Is it a reliable test? What are the possible complications?
Prepare for questions you might want to ask about a treatment plan: What other options do you have? (consider factors like financial implications, time off from work, side effects, complications, recuperation time) Is this the least invasive treatment option? (consider medications versus surgery with pros and cons of each) Is it compatible with your age and lifestyle? (will you need help performing activities of daily living, will you continue to be able to pursue your favourite sport or hobby).
Jot down questions you might want to ask about a medication: What does the medication do? Will it effect your concentration or make you drowsy? What are the possible side effects? Will the medication interact with other medications? Are there any red flags you should watch out for?
Stress and anxiety often accompany healthcare related issues. Being organized and knowing what to expect takes away a lot of stress. Gathering reliable information is key in making informed decisions. If you feel overwhelmed with all the different aspects of managing a health scare, seek help. Work with a health advocate. Working with a health advocate can empower you and provide you with the information you need to make informed decisions.