Thursday, March 15, 2012

Becoming Your Own Advocate

If you do a Google search for self-advocacy, you will find many sites that tell you how to be your own advocate if you are mentally ill, have autism or a brain injury. However, there aren't any sites that tell us how to be our own advocate if we have autoimmune arthritis.

Anyone with a chronic illness needs to learn to be their own advocate. There are some very simple steps that you can take to start you down the path to self-advocacy.

The first step, keep a health journal. In your journal, document all of your symptoms. For example, if you are having pain, document the pain including the rate and quality of the pain.  By rate, I mean on a scale of 0 to 5 with zero being no pain and five being the worst imaginable pain. Quality of pain refers to the type of pain: stabbing, pins and needles, ache, etc. And last location of the pain.

Document if you have fatigue and use the same 0 to 5 scale with zero being no fatigue and five being the worst imaginable fatigue. 

When you are having symptoms, check your temperature often and document it along with the pain and fatigue.

These symptoms may be documented on a simple chart such as the one below.

(0 to 5)
(0 to 5)

In the notes section, document any other symptoms or anything else that is going on with you at that particular time.

The second step to self-advocacy, in addition to your journal, keep a list of questions you would like to ask your rheumatologist. In between visits, when you think of a question you would like to ask, jot it down. When you go to your visit, take your notebook with you and ask the doctor those questions.

If you are having a flare and you have joints that are inflamed, take pictures of the joints. Print those out with date and time so that it can be correlated to your health chart.

The third step to self-advocacy, keep copies of all of your medical records. They are your records and you have the right to a copy of anything and everything in that record. Some physicians will charge you a fee to copy your entire chart but most will give you copies of your most recent labs, x-rays, etc at no charge.

If you don't want to deal with all of the paper, scan the records into your computer and keep them in a file on your computer. You can even purchase a medic alert bracelet that has a USB drive attached and save all of your medical records onto it.

The fourth step could be one of the most important steps. Ask your physician to review the results of any testing with you and to explain what those results mean. It's important that he discusses all of these results with you and that you understand what they mean. If you don't understand what he is saying, stop him and ask him to explain.

These are some simple steps that will help you start down the path to self-advocacy. It's very important that you become your own advocate. Your health is the most important to you and your family so you must take charge of your health care. Ask questions and expect answers. Keep asking until you are satisfied that you understand the answers.



  1. RA gimp, they actually sell health journals to help track meds, symptoms, pain and have little bodies front and back. If you want the link I will go find it. I used to use it but then made one on my computer instead.

  2. Tess, I would love to have the link! Thank you so much.