Advocating for Yourself When you are Chronically Ill

Being able to advocate for yourself and your symptoms is a crucial part in getting a diagnosis.  This skill is definitely not one of my strengths; when I speak with doctors I always diminish the severity of my symptoms almost to the point where it doesn’t even seem like I have an issue.  Although I have plenty of room to grow, I am ready to become a strong advocate for myself!  If this is something you want to improve on or have room to grow I have a few tips that I find are helping me become a stronger advocate for myself and my health.

  1. Write your symptoms

Chronically ill people can be quite complex, and when you are at a doctor’s appointment it can be difficult to explain all of what is going on off the top of your head; some people can do that and I applaud them but I am not one of those people.  For me, I can’t remember all of my symptoms without them being written in front of me or I am currently experiencing them.  If I write down all my symptoms it makes doctor appointments much easier.  Having your symptoms written down not only helps you but can also help your doctor keep track of everything you are telling them.  Writing down my symptoms was the first step for me to become a better advocate for myself.

  1. Record the severity of your symptoms

Sometimes we may downplay the severity of our symptoms in order to not be seen as a complainer, but this never works out in our favor.  Either the doctor thinks we are actually okay, that we are making it up, or that it’s just in our heads.  This already happens enough when we talk with doctors so if you are not straightforward or accurate with your description of what is going on it just makes it easier for doctors to brush off your symptoms.  If you keep a log of the severity of your symptoms you can show it to your doctor and they can see if you tend to have worse symptoms in the morning, night, or if your symptoms are worse on certain days of the week.  Having a record of your symptoms is a great tool for both doctors and patients.  I am still working on this step but I am improving every day.

  1. Be completely honest

We chronically ill people can be quite stubborn sometimes, or at least I can. I just want people to think that I am strong and I don’t want to show my weaknesses, and I know I’m not alone in this.  Sometimes I act so strong and that my doctors can’t even see how much pain I’m in.  That is why I am changing the way I talk to doctors and I am working on being true to my symptoms and not lying about how I truly feel.  One thing that you must do if you want to get an accurate diagnosis is, be honest, you can have all your symptoms and severities recorded but if you are not honest it does nothing to help find your diagnosis.  This will definitely be my most difficult step in becoming a true advocate for myself as I want nothing more than or people to think I am strong, but I am growing and maturing all the time and am ready to be my best advocate.

  1. Get help from those around you

Sometimes we end up in situations where we are unable to advocate for ourselves and we need those around us to help us out. When we are so tired or are having a bad brain fog day it is harder to advocate for yourself.  If you ask your family or friends to write down what the doctors are saying and have them help us voice our concerns we can look over the information we receive when we are feeling more like ourselves.  Sometimes doctors that we are new with need a bit more explaining to understand fully what we are dealing with and why we are there. Except when we are not at our best that can be extremely difficult, but with the help of family and friends we don’t have to worry about getting the point across and we can focus more on getting better.  This is the one step I think I have down I always share my concerns with my family so if I am at a doctor’s appointment and can’t remember what I wanted to say they can help remind me.

  1. Write down questions to Ask

Often times we can get overwhelmed with news or loads of information, this can make it hard for us choose what questions to ask because we just have so many, but you know as soon as you are out of the appointment you’ll remember everything you wanted to ask!  We may not always be able to remember every question we have at the moment but a good idea to avoid this as much as possible is to write some out before your appointments.  I recently watched a video on YouTube from Doctor Mike and he had some great generic questions to start with to get a baseline after receiving new information.  They are all listed below and I even added some of my own that I find helpful in my appointments.

  1. Why should I take this medicine?
  2. What are the side effects? Do the side positives outweigh the benefits?
  3. What is this test for? What will it tell us?
  4. When should I follow-up?
  5. What would you recommend for your family?
  6. What should I focus on? What comes next? Where should we go from here?
  7. How much experience do you have treating patients with this?


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