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If you or a loved one have been diagnosed with a chronic illness, it can feel as if you have lost control over your life, your/their own body, and your/their rights.
Regaining a sense of control by purposefully advocating for yourself or your loved one will give you back the hope and self-esteem you need to work toward recovery and a higher quality of life.
Into the deep.
After being diagnosed with something scary, it’s easy to default to doing what exactly the doctor says.
Shock and stress actually locks you out of part of your brain, preventing you from accessing your frontal lobes. These are the parts in charge of rational decision making, often called “executive function”. The problem with that is, once you’ve regained your senses, you may feel like you can’t change your mind or are locked into a plan to which you don’t remember agreeing.
From our experience and other medical experts, we’ve collected 5 Smart Steps on how to advocate for both yourself and your loved one.
You are the expert on yourself. Your doctor is an expert on your condition, but only you know who you are, how you are wired, what you respond to, and what your life can be.
No one else has a PhD in you.
Only you know if you are so full of spit and vinegar, woe to any illness that thinks it can beat you. And only you know if you are willing to take the risk of experimental treatments. Or if you are content to leave your home a couple of times a week, or if being alone makes you stir crazy. Bottom line? Only you know you.
Now that you’ve had time to let your diagnosis sink in, it’s okay to ask questions that possibly didn’t occur to you at first:
Ask the doctor:
Don’t just ask for opinions, ask for the research. You have to educate yourself. Your doctor may have strong opinions about what they think you should do, but the best question is, “what do YOU want to do?” You have to be informed to make informed decisions. Educate yourself on the disease, the disease process, what to expect, etc.
Find out how your insurance works — what it covers, what it doesn’t cover. Are there resources out there your doctor may not be aware of? New research? Experimental treatments? Find out if they are treating your condition differently in other countries with success. What is your doctor’s success rate in treating this illness? What have others done in your position and how’d that work out for them?
Some trustworthy resources online are:
It’s also okay to ask for a second and third opinion. Generationally, the people who are 70 and older tend to do what the doctor tells them. (If this is you, see #1!)
Doctors —while they have knowledge and access to finding out what is going on with you — are not your boss. They work for you. You go to see them, at your will, and pay them for their expertise. But, there are times when they may have an idea about something, like treatment vs hospice care, and it may be uninformed.
Often times physicians don’t have a clear understanding of eligibility requirements for different services that you may qualify for, and this can be a barrier to your options. So, although they are the guides with incredible amounts of knowledge, it may take more than one expert to get a clear picture of your options, and you have to research the options yourself to make a clear decision.
Okay, self-advocating rock star, you got this! You’ve started believing in yourself as your primary champion. You’ve asked all the questions. You’ve done your research. You have all the experts opinions. You made your choice, and you have decided to stick with it.
But then… sometimes we go in knowing what we need or want and leave in a different position because we somehow got railroaded. It’s not uncommon to get wavered in the presence of the lab coat.
Part of being firm and persistent is writing down what you want or need and making sure you communicate it clearly and at times more firmly than you are comfortable with. If you need to, show the doctor what you’ve written down.
This is YOUR life. You get to choose how you respond to it.
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