Your Action Steps to Achieving Self-Advocacy
You can have me read this article to you instead of reading it yourself…
Or you can read it the old-fashioned way below…
If you haven’t seen me geek out about self-advocacy yet, no worries, you can find all of that information here, here, and here!
If you have, though, you’ve come to the right place. Because now we’re going to talk about the action steps each person can take to become a strong, successful self-advocate.
1: Build Your Knowledge
There are a few ways to go about doing this. The most obvious, of course, is to read my book! Ok, not really. Partly because it doesn’t cover every GI condition, and mostly because the point of this website is not to sell you anything. That being said, the book is titled a Roadmap for your Journey because it is truly meant to be just that – a roadmap that provides you with the knowledge that you need to be a self-advocate, most of which cannot be found online.
But seriously, building your knowledge is key and it all starts with gauging your current level of understanding. Do you feel like you know what your condition is? Do you understand why you have the symptoms that you do? Do you know what each of your medications does and why? When you are in the doctor’s office, do you understand all of the things that you are told, or do some things go over your head or in one ear and out the other?
It can be very helpful to make a list of the things that you do and do not understand. This forces you to begin asking yourself questions, each of which often leads to another question. These questions will guide you to recognizing the topics that you don’t understand or don’t feel comfortable with – the gaps in your knowledge. And once you understand these gaps, it becomes much easier to find the information that you need for free or online, if it is available.
2: Own and Understand Your Treatments and Strategies
Just because your doctor prescribed the drugs that you are on and your friends recommended the supplements you are taking does not mean that you are not the one who chose to take them. Because you are taking them, you need to know what, why, and how. You need to know if they are helping. You need to know if they are causing side effects. Understanding the strategies that you are using to manage your health is crucial to advocating for your health.
Make sure that you have a list of everything that you are currently doing to treat your condition. This can include medications, supplements, diets, lifestyle changes, exercise regimens, and more. Each one of these items falls into the bucket of strategies that you are using to improve your health, so own each one. Understand it to the point where you can stand behind it.
Don’t think you can stand behind it? Is it because you don’t know enough to do so? Guess what – that’s one more area in which you can build your knowledge. Is it because you don’t believe it is working or you don’t think you have a reason to do it? Then that is an opportunity to advocate for a change.
3: Get More Comfortable with Speaking Up
I’d say that this is one area where practice really does make perfect. And I don’t just mean practice in the sense that you tried and tried again at the doctor’s office. I mean practicing before you even get there. Make a friend, partner, or family member pretend to be the doctor. Practice the conversation that you want or need to have at your next appointment. Have your “doctor” protest and push back on you. Make it a difficult situation so that you have to push yourself to speak up.
It can also be helpful to apply this practice to all parts of your life. Your health isn’t the only place where self-advocacy is important. If you tend to shy away from confrontation, take small steps towards breaking this by asserting yourself when you might have previously backed off. This could be an act so small as to let the waiter know that he got your order wrong, or asking someone to please not cut ahead of you in line.
If you are someone that has no issue with asserting yourself in typical situations but finds yourself constantly blown off at the doctor’s office, take a good look at why this might be happening. Are you subconsciously deferring to their expertise? Are you nervous or anxious in these situations? Is it simply the fact that you don’t have a good relationship with your doctor?
4: Identify Providers that are on Your Team
If I asked if it’s simply the fact that you don’t have a good relationship with your doctor and you thought, “Oh, no doubt”, then that is not OK. It’s time to find another one. And yes, I realize there are barriers to this. But most barriers can be overcome if we are adequately invested in our health. Insurance plans may limit your options, but if you are willing to travel further, our options expand. You may need to get authorization to see specific providers, but this authorization can be obtained if you assert yourself.
There is only so much you will ever be able to do if you don’t have a doctor that is on your team. If their interests lie in enrolling you in a study they are conducting or adding you as another case in the books, you’re never going to feel like you’re being properly cared for. You can assert, you can even yell, but their interests simply are not aligned with yours – their primary focus is not to improve your health and quality of life.
This extends to all of your specialists that you might be seeing for various reasons. For instance, I see a GI specialist as well as an endocrine specialist. My endocrine doctor needed to be on my team and recognize that I needed special considerations in order for my medications to work despite my gastroparesis. It also extends to the others involved in your care. Your dietician. Your local pharmacist. Your counselor. Make sure that you have surrounded yourself with people that are on your team.
5: Involve Someone Else in Your Care
This someone else could be a friend, a partner, or a family member. As long as it is someone that cares about you and wants you to feel well and be healthier, they can do the job. This person needs to be involved in your care so that they can be a second voice, as well as an accountability partner.
Some of you will be blessed enough to have someone in your life that is able to accompany you to your appointments, or be by your side in the hospital. This person needs to know that you want them to speak up on your behalf. You want them to be your voice when you don’t have one, or to be a chorus when you are not being heard.
For those of you that are not able to have someone with you at all times, you can have this person be your accountability partner. Tell them the things that you are planning to talk to your doctor about. Discuss with them what you are going to say and why you need to know. Then have them follow up with you afterwards and make sure that you did what you planned to do. Knowing that discussion is coming can be the little extra push you need to say “Wait, I had another question” instead of stepping out the office door.
What Else Can You Do?
As you work on each of these steps, you will find yourself constantly identifying ways to get involved in your own care. You will identify things that you want to improve. You will begin to have confidence in your ability to know what does and does not need to change.
And you will have a voice in your own care. That in itself is a powerful thing. New lingo in the medical field has birthed the term ‘patient activation’. I like it. I want to be an activated patient. I want to be a patient that is actively involved in what happens to me. I can’t imagine anyone would want less for themselves. I talk more about how to make sure these skills work for you and not against you in the next article.
Can’t get enough? No worries! I’ve got all kinds of stuff for you to learn and explore here. Want a suggestion? I personally really like this article about simplifying your health.
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