3 Steps to Successfully Self-Advocating the Healthcare System with a Chronic Illness
While healthcare providers are a critical part of keeping us well, it is important to recognize that the traditional top-down authority design of the healthcare system is not terribly effective for many patients, particularly those of us with chronic illness.
We need healthcare providers for their expertise. And, we need more than that! Thriving with chronic illness requires going beyond the top-down model. We need better coordination of our entire treatment plan, to be heard and understood, and to look at our wellness as a whole.
The path to truly taking control of your health and healthcare is by becoming your own healthcare advocate. This means becoming a partner or collaborator with your healthcare providers rather than taking a passive role. This also means taking a more managerial role.
The reason this works is because you know yourself and your situation better than anyone else. And, you have the most at stake.
But, how do you take the wheel?
The answer — self-advocacy.
I don't like that self-advocacy is a necessity, particularly when you are not well and are running low on energy. But, unfortunately, this is the imperfect system we have. And, if you are going to get the most out of it, you need to be proactive.
I have learned this the hard way (and some lessons have left me with life-long consequences). But, my hope is that I can use my experience to fast-track your learning curve so you don't fall into some of the same pitfalls that I did.
Accordingly, I compiled 3 steps to successfully self-advocate the healthcare system with a chronic illness - because, you deserve to receive the best care and support.
Here are the steps:
1. Change Your Mindset
Recognize that you have agency over your health.
Sometimes it can be difficult to take the reins of your health. It can be a lot to manage when you are exhausted, have multiple providers, prescriptions, and treatment protocols. There are a lot of moving parts that can become overwhelming.
But, if you don’t know what is going on, who does? This is why it is important for you to step into the role as your own healthcare CEO.
One way to do this is to get organized. Whether that means creating a spreadsheet, putting all your medication in one place, updating your calendar, putting your healthcare-related information in files - some basic organization can get you on your path to managing your health.
Another way is to realize that your healthcare providers work for you. It is easy to feel intimidated when speaking with a medical expert. What could you possibly know about your condition as compared to an M.D.? Well... A LOT! No one knows your symptoms and triggers more than you. Don’t discount your experience. Use your expertise to work with your provider. Realize that they are your service providers.
Gaining more agency over your care will result in improvements to your health and quality of life. It will help you to get better, more personalized care that works for you. And, it will put you in the driver’s seat of your health.
Some tips for getting you in the driver’s seat:
Get organized
Ask questions
Email or call your doctor between visits, if needed
Plan for your doctor visit with my free Appointment Planner
Take notes during your appointment
2. Get Involved In Decision-Making
Taking things one step farther includes getting more involved in decision-making regarding your care and treatment plan. Realize that you have the power to make healthcare decisions (big and small). In addition, you have a lot of responsibility in following through on your provider’s recommendations.
Medical professionals have an important role in your care because they have the medical expertise. But, keep in mind that each has their own particular area of expertise and corresponding point of view. It helps to think of them more as your expert consultants rather than your directors.
Viewing your health as a whole, and how all the pieces of your care fit together, is the key to treating you effectively. The way all these pieces fit together and work best is when you are involved and being proactive. Get informed, consult the right professionals, get second opinions, dig for answers, and proceed with what seems right to you once you have enough information to make decisions.
Some tips for facilitating decision-making:
Research your chronic illness and related treatments
Get a second opinion (or a third)
Don’t give up on finding the right answers and providers
Understand your insurance coverage
3. Create Your Dream Team
This third step in self-advocating ensures you have the best healthcare team you can assemble with the resources that you have. This involves:
Finding the best doctor(s) for your disease/condition that you can so you have access to great advice and experience. This can take some time and can involve seeing some providers who are the wrong fit before you find the right one. But, in the end, when you find the right provider, it can be a game-changer - you might get your questions answered and receive the care you deserve.
Finding the right integrative providers to complement your traditional care. The reason for this is that integrative providers will take the time and effort to dig into your condition on a deeper and more fundamental level. They are less about treating the symptoms than treating your underlying health. They help to uncover some underlying issues that may help to alleviate stressors on your immune system so that your body can better focus.
Some Tips for Creating Your Dream Team:
1. Research providers through accrediting boards, patient advocacy groups, etc.
2. Ask for recommendations
3. Interview the practitioner, if possible
In truth, this 3-step process can take a long time.
However, when you have a chronic illness, you are playing a long game. When you start to look at self-advocacy as a long-term strategy, it can give disappointments (like a difficult search for the right provider) some perspective. One setback is just that. It is not a reason to give up on advocating for what you need. You deserve excellent care.
What is your biggest challenge in advocating for yourself in the healthcare system?
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