What does it mean to advocate for your own health, and how can you do that without alienating the medical staff caring for you when you need them? Advocating for your health, simply put, is knowing your own body and rights well enough that you can communicate this to your medical care team to get the support and treatment you need to resolve ongoing or new health issues. It’s about pushing back when you feel you’re not being heard and making sure you get the right information across when it matters.
This post is going to look at a few different ways you can do this and make a noticeable difference in how you’re treating moving forward.
Keep A Symptom Diary
One of the best things you can do for your medical care is to know your symptoms and track them. You might not feel they’re important or even connected. And this might be true; they might not be connected, but tracking them gives you the bigger picture. You can pinpoint what your body is reacting to when and under what circumstances. You can remove any questions from your appointment when your doctor is collating information about how you’re feeling and what symptoms you’re dealing with. Track times of day it gets worse or when it’s better, how it impacts things like energy levels, your ability to do daily activities or sleep. Give it a few weeks, then deliver this to your doctor at your next appointment.
Ask for Things in Writing
It is your prerogative to ask for anything you need from your appointment in writing. Whether this is your results, a treatment plan or a diagnosis, it needs to be written down. It is standard practice, and it’ll help you compile the details you need to look back on after the appointment.
This is important as your brain might not take in everything at the appointment, or you might not fully understand what you’re being told, and things can get confusing.
If you have it all written down, not only will this help you keep up-to-date records, but it’ll also give you something to look back on to reduce anxiety and overwhelm in the moment.
Research From Reliable Sources
It is really important that you understand how to gain credible and scientifically backed research and information pertaining to your health. There’s a lot of misinformation swirling around online about various health conditions and ailments. So sifting through it all can be challenging.
At this point, using medical journals that are peer reviewed is important,t as finding resources from charities on the health condition you’re looking into, pre- or post-diagnosis, can help. As you can find experts in the field or topic, too. This is looking at places such as charity websites, health provider-specific websites: the NHS is a great resource, and places like John Hopkins, Mayo Clinic, and Cleveland Clinic are good places to start. From here, medical journals are also a viable source to get what you need.
Using websites and resources can help you uncover more about what you need to know about what you’re facing, especially in the face of a diagnosis. A Myeloma diagnosis, for example, can be an incredibly worrying situation, but gaining the right information about the condition, the treatment options and what you can expect will help you to advocate for yourself at your ongoing appointments and make sure you get exactly what you need in the next steps of your journey.
Write Questions Prior to the Appointment
For the most part, when people head into an appointment, the questions don’t come, or they remember after they leave. With this in mind, before you head to your appointment, make a list of everything you want to ask or you need to know. If the doctor doesn’t know, they can’t answer them. And if you do have them and they can’t answer these questions there and then, they can guide you in the right direction to get what you need.
When you have your list, prioritise the questions so you get to the most important ones first. If you’re limited on time, you’ll need to get the more urgent questions answered first before your appointment ends.
Bring Someone with You
A second pair of ears at your appointment is invaluable. They might be able to understand what is going on to help you dissect the information post-appointment. They can also help you with asking questions you might not think of in the moment, especially if things get overwhelming.
Choose someone who is supportive, knows what to ask and can listen carefully without taking over. It’s a supportive role you want, not someone who will dominate but will let you speak up for yourself.
Second Opinions Are Possible
You are more than entitled to ask for a second opinion for any of your medical care at any point. You don’t have to accept your main provider’s opinions or point of view if you feel it’s not serving you or your health.
This doesn’t mean you don’t trust your doctor or that they are incompetent, but having the option to seek further advice and clarification for another point of view can be a way to help things surface that might be looked over otherwise.
You can ask your primary care provider, i.e., your GP or consultant, if they can refer you, and you can move forward this way.
Keep Organised Notes
This is really important, especially if you have more than one condition or you have a chronic condition.
Organised notes are the best way to help you advocate for yourself. The key here isn’t to ambush every medical professional with them at each appointment; it’s to know what is needed and when so the right people get the right information at the right time.
Organise your notes between providers, conditions, recent appointments, current medications and doses, allergies, recent test results, and specific diagnoses. This makes it easier to present the right information to help you improve the standard of care you receive and avoid providers taking the wrong approach. When you need emergency medical care or you need to see a new provider, this information will be incredibly useful.
