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5 Tips to Become Your Own Chronic Illness Advocate

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For a healthy person, it seems so easy. Go to the doctor they check your temperature, maybe do a strep culture, and *bam*, you have your diagnosis and treatment plan. They prescribe you your medication and you’re on your way. For people with chronic illness, it’s a bit different. Sometimes your blood work comes back totally fine, and your body feels otherwise. The doctor will say “you’re the picture of perfect health, go on with your life” when in reality, there is more to the picture.

1. Do your research.

This is a huge one! Do your own research prior to your appointment. If you think your symptoms line up with a certain diagnosis, look at clinical studies/criteria done about that diagnosis and talk to others with that diagnosis. You may come to realize that a lot of chronic illnesses are based on a clinical diagnosis. That means sometimes your bloodwork may come back normal but you are still sick. Being able to say “I have heard sometimes this test will come back negative with people who have ______.” Or “I have read that this test is only 50% accurate.” The doctor will hopefully opt for more testing, or send you a referral, etc.

Don’t completely negate what a doctor says — work with your doctors. If after numerous second and third opinions those new doctors still say they aren’t sure, then maybe it’s time to go back to the drawing board.

2. Ask questions.

Never be afraid to ask questions, and even question the doctor’s opinion. Questioning doctors and their opinions can help lead to the proper diagnosis. Getting a second opinion might be beneficial, as misdiagnoses can happen. Asking questions about your treatment options, and knowing you can opt for other treatment, will put you in more control of your health.

3. Take pictures, keep a log of your symptoms, and bring this information to your appointment.

Sometimes it can be hard to explain symptoms like what types of rashes are occurring, or what it looks like when you have a joint come out of place. Take as many videos and pictures of your symptoms and show them to your doctor. Instead of questioning if what you are saying is accurate, doctors can see it for themselves through pictures. They can also be able to determine the true colors of rashes, and if they are raised or not. Also many times doctors’ appointments are scheduled based on when you feel up for going in, which may be the day your rash isn’t visible. Pictures with time stamps and dates can allow doctors to see what you are trying to explain.

4. Bring a medical binder that contains all of your proof of diagnosis to new doctor visits.

Always make sure you bring proof of all important blood work, testing, and diagnoses on paper to new doctor visits. This way they can validate what you are saying, and they can copy these results onto your records at the new doctor’s facility. This can save time explaining the testing you have had, or why your diagnosis is valid.

5. Bring a spouse, friend, or family member who is supportive.

Sometimes there are just things you can’t take pictures or videos of to show, such as fatigue or pain). If you have a spouse, friend, or family member that has been there to see how your illness has affected your life, they can advocate along with you. The doctor will be able to validate what you are saying if other people have been there to experience it with you. This person can be there to let the doctor know the things you may not be able to see for yourself. For example, if you experience seizures or fainting, if your spouse, friend, or family member is around, they can tell your doctor how long you were unconscious, how long it takes you to come to, etc.

Overall, being your own advocate will get you through the medical system with hopefully the least amount of emotional stress. Advocating for yourself will help your doctors better understand what is going on with you, and better understand how to treat you.

Getty photo by Morsa Images.

Originally published: September 7, 2022
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