A doctor and lupus patient having a productive conversation.

Advocating For Yourself

Are you having a difficult time advocating for yourself with your doctors? Are you tired of having to print forms and fill out forms because every time you move, you need a new doctor and they know nothing about your situation?

Advocating at the doctor's office

I know sometimes it's hard to be in front of a doctor that has an educational background but cannot emotionally stand in your shoes. I felt that way plenty of times. I felt that way so many times that I learned my body. I would tell doctors NO even if they felt that it was right. It was not right for me. I will not subject my body to any more damage – it has already been through for no reason.

I have been through some doctors where I walked in and they said something that I did not agree with and walked out. Why? Because it is your body and it should be your choice. There were times I was so bed-bound in the hospital that I had to learn how to walk again before I left and I had to gain up the strength to even get on my feet. Some doctors said with lupus it is trial and error, but I do believe that a patient should continue to be a test dummy especially if a doctor is just trying out drugs on your body. Certain drugs can cause long-term effects on the patient's body.

Tips for self-advocacy

Here are some unique tips you can use to learn your body as I did:

  1. Ask questions. Remember no question is a stupid question.
  2. Take notes.
  3. Research any terms you do not know that the doctor has spoken to you.
  4. Organize. Keep track of your weight, blood pressure, and heart rate for your doctor.

"Know your worth"

I went to my rheumatologist and she was surprised that I could tell her about my health from 2013 to current. That is because I lived and learned that it pays to know your health history so you do not have to repeat the same test and medications. Sometimes, when your doctors question why another doctor put you on that medication, try to figure out the reason why. Sometimes doctors change medications when there is an underlying reason you are taking that specific medication. Know your worth when you go into the doctor's office. Even if some of the things the doctor may tell you can depress and discourage you, keep that faith intact. Use meaningful resources to advocate for yourselves. This is why hospitals or colleges start studies so they can learn more and more about diseases that are unpopular and uncommon.

When dealing with lupus we have many moments where we feel misunderstood but do not sit there and let someone do things to you that you are uncomfortable with. Because, at the end of the day, the medication is going through your system. At the end of the day, it is your body. Sometimes you need to realize and be the spokesperson for your own body.

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