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Being your own advocate for your Autoimmune Disease.

Writer's picture: heklund313heklund313

Updated: Aug 27, 2023



What does being your own advocate look like? What does it mean?


For me when I first thought of advocating, I had thoughts of confrontation and disagreements and fighting for rights. All things that make me feel stress and anxiety. Yes, those things can happen. However advocating for yourself is also self care and self love.


Advocating also means doing the research and asking the questions to get the information to improve your health and your life. It means being there for yourself. If a doctor prescribes you a new medication ask them about the side effects ask them what exactly does the medication do to help. Ask them how long it will take to see a change and when you get the medication, read the pamphlet that comes with it. Understand what you are putting into your body.


At times I see people state that their doctor told them to diet and exercise, but there was no direction beyond that. This is where we as the patients need to ask. What kind of exercise? What types of exercises should I avoid? What types of foods should I avoid? Is there a specific diet I should follow? Here's what happened when I asked my doctor these types of questions;


Dr. "You need to keep moving, so I want you to add some exercise each week."

Me: What type of exercises, because I used to use weight machines a lot."

Dr. "You'll want to avoid those. Try low impact. Anything that doesn't put stress on your joints."

Me: "Okay, like walking? I like to walk."

Dr. "No, that can hurt your knees and ankles. Water exercises, elliptical, those types of activities."


On another visit I asked about nutrition, this is how the conversation went;

Me: "what is the best diet that I can follow? I have noticed an improvement in my symptoms since working on my diet, but I don't know if I'm following the correct diet."

Dr. "There really isn't one specific diet that we can recommend other than possibly a heart healthy diet, due to the fact that your disease can increase issues with your heart."

Me: "Are you allowed to recommend or refer a patient to see a dietitian or someone that can help me create a good diet?"

Dr. "Unfortunately no."


To be honest I was a bit bummed about the walking thing. I like to walk. But, you can see that I was given some specific answers and some not so specific answers. But I asked the questions and now I have a place to start and that can make all the difference in the world.


Advocating for yourself can feel uncomfortable. Especially if you feel that your doctor doesn’t seem to want to listen or if they come off as rude or judgmental. Sometimes it is better to find a doctor that will listen or at least not come off as they’re judging your life choices. But finding a new doctor has its own challenges. Insurance may not cover any other Rheumatologist or their may be only one in the area. If this is the case you may be able to tell the PA or nurse that you have questions and can they let the doctor know or if your doctor is like mine and they have you fill out a questionnaire right be for you enter the exam room, you can write them on that. The point is to start. Even if it's just one question.


Advocating for yourself is a way for each of us to be better patients. Better informed about our disease, the medications we take and our bodies. It’s a way for us to take action in our own health and well being.

Be there for yourself, because you deserve it.



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