My mom came from a medical background and taught me from a young age that you needed to advocate for yourself with your healthcare. I learned how to ask my own questions during a clinic visit, how to describe my symptoms, how to get a second opinion if I felt one was needed and how to follow up on test results.
Being your best advocate is critical because life is not perfect. Our care teams include amazing individuals who work hard every day to give us optimal care, but we are all human and can make mistakes, even in the medical profession. Great healthcare providers are being asked to do more in less time and things can get overlooked, however unintentional.
Errors or omissions can have negative consequences for patients, like going to the chiropractor for years before the doctor suggests that maybe you need blood tests run for your constant back pain (and eminent fracture). Or a doctor who doesn't run genetic testing at diagnosis so you have no idea what type of myeloma you are dealing with after you've started therapy.
Even though we may be feeling awful as a myeloma patient (and dex makes everything worse), how we interact with our care teams is critical. Our outcomes will be partially influenced by our approach with our healthcare team: passive, assertive or aggressive.
Being Too Passive
With a passive approach, patients fail to ask questions, lack curiosity about their disease and bury their heads in the sand. We already know that this is NOT the way to get good care. Ultimately, you are in charge of your care, no matter how unfair that feels.
Assertive or Aggressive?
The other two approaches (assertive and aggressive) may both seem like good options, but one approach will help you obtain the best care and results while the other approach will have your healthcare team dreading every time you come to clinic.
Let's first define Assertive and Aggressive, which are completely different ways of approaching care, day-to-day interactions or confrontation:
|Productive||Makes things worse|
|Standing up for yourself||Puts others down|
|Encourages help||Discourages help|
|Asks questions||Demands answers|
As you can see, an assertive approach is healthy for you and everyone else around you. It is a positive approach that respects your needs, but also the needs of others. You neither undervalue yourself or ignore the value of others. Assertive behavior is rooted in respect, while aggression is not.
Here's what we learned from some of you when we invited you to share your experiences:
"IMHO, being assertive includes doing your own research, being prepared for Dr. visits with your list of questions, listening to your instincts when you feel something's off, and not backing down if you feel dismissed. I've never had to become aggressive through any part of my husband's 3-year journey because being informed and persistent has always worked."
"Ever since I read that every patient is ultimately the CEO of their care, I’d say I was assertive, especially as it pertained to anything I felt was not as necessary as my doctor(s) indicated, such as bone strengthener. Of course, I never pressed my assertiveness without doing a good deal of research first. For example:
Once I learned that bone strengthener was just as effective when given once every 3 months as apposed to every month, I printed out the reference about that, and let it be known that I would take it only once every FOUR months - primarily because I didn’t like the aches and pains I felt soon after getting it. More recently, I accept it only twice a year.
Another example: Acyclovir… it upsets my stomach. I have not taken one in many years now. Aspirin…. I learned that just drinking lots of water every day will thin the blood just as well if not better, so I took aspirin for the first 6 months after diagnosis, but not since then.
Part of my decisions are based on the fact that my supplements are so very complete that they have all bases covered as it pertains to helping me maintain a strong immune system, and they are always listed along with my list of medications." Larry P
"MY approach was assertive. I chose to have my provider act as consultant and we worked well together. My "consultant" gave me 3 choices of who he considered would be appropriate for a second opinion. After giving him due respect (because he would discuss those opinions with the other providers), it made him more comfortable in the end with more aggressive treatment. I kept it simple with an excellent outcome. I make the decisions in my life, but my provider was totally ok fully informing me on all aspects of the options and his opinions. I believe 100% in moving forward one day at a time. This approach is not everyone's cup of tea, so to each their 👍 own respect" John W
"I feel like assertive is being your own advocate, being informed and asking questions until you have an understanding of what is happening, why and what the potential benefits and side effects could be. When I think of aggressive, it’s in terms of treatment course. Meaning (to me) the most intense treatment looking for the max positive result even if the side effects are taxing. People tend to think if you are younger you are in better overall condition and can sustain aggressive treatment. If a patient is frail with lots of other health issues then a less aggressive plan of treatment may be a better fit." Mary H. B.
When I got blood cancer - an incurable lymphoma - my original oncologist wasn’t working with me. After the first month I asked her if she could recheck my LDH and Beta2 microglobulin levels. She said “no I don’t do that” even though she was doing blood test and those aren’t expensive tests. She also wouldn’t consider maintenance treatment, saying for my incurable lymphoma that it doesn’t extend survival only extends remission, which I wanted. She also refused to discuss risk and if I was high risk. Her attitude was “don’t worry your pretty head. I’m the doctor.”
So I went to Fred Hutchinson/Seattle Cancer Center for a second opinion and got a specialist. He ordered those tests without my asking and when I asked about risk, he said yes, you’re high risk. Then he said he recommended maintenance therapy.
I told him I was type A and an analyst by training, researched all the time and I’d probably drive him crazy with questions. He laughed and said he didn’t care, he was used to dealing with Microsoft executives and Boeing engineers who did the same thing. He became my primary doctor and I’m still in remission.
So my advice is to ask questions, advocate for yourself, be polite but determined and always always don’t hesitate to get a second opinion, preferably at a large university hospital cancer center.
Also, doctors should be respected but they are not gods and not infallible. My father in law was a brain surgeon, my brother is an ER doctor and now my son is a doctor and my RN daughter is in a doctoral program to become a certified registered nurse anesthetist. They have given me exposure to medicine - the good the bad and the ugly. No doctor knows everything all the time. It’s your life. Laura D. R.
"IMO Aggressive would be like overbearing. Not many nurses or Dr.'s deal well with overbearing or rudeness. Assertive to me us being your own advocate. I know my Dr. and all the nurses love that my husband/caretaker are our own advocates." Bernice E. J.
"Persistent with kindness versus pushy and rude …… at the end of the day they are trying to save our lives. Always lead with kindness." Stacy U
Your Best Outcomes
Assertive behavior is productive, while aggressive behavior is not only ineffective, it can make matters worse. Being rude or unkind to your caregiver or provider (no matter how much dex you are on) will have others stepping away to avoid confrontational interactions. Since the goal is to obtain the best care possible, be kind, ask questions, keep your cool when things go wrong, and know that at the end of the day, you are the ultimate decision maker for your life.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).