The Importance of Being Your Own Advocate When You Have a Rare Disease

Knowledge is power, especially when you are living with a chronic illness. I was reminded of the importance of educating myself and my loved ones about my illness and my needs this week when I ended up in the emergency room with unexplained, life-threatening symptoms.

When you have a rare illness such as mitochondrial disease, like myself, you can expect to be on the receiving end of dumbfounded looks from doctors and nurses in nearly every medical facility you frequent. The fact of the matter is that you and your loved ones are probably the most knowledgeable people in the room when it comes to your illness and your needs. Doctors just are sometimes not familiar with how to manage rare diseases in these situations. This illustrates the importance of understanding fully how your illness affects you, and what your needs are in emergency situations.

Understanding your needs is only half of the equation, however. If you cannot effectively advocate for yourself, or identify a trustworthy companion to advocate on your behalf, then you will never receive the care you require. You must be vigilant in emergency situations or your life literally could be at risk. In my case, I must remind the medical personnel not to give me traditional IV fluid each time the IV bag is replaced because it is toxic to my system. I am required to monitor my own medications due to the constant mistakes in medication management in the hospital setting. I need to ensure they do not use traditional anesthesia protocol on me as it can be fatal due to my illness. A simple trip to the emergency room can turn into a life-threatening mistake if I or my spouse are not vigilant in ensuring that the medical team is fully educated about my illness and my needs at all times.

They don’t always want to listen. Many doctors feel as if they know best, and they aren’t here to take orders from the patient. It is imperative though, if you have a life-threatening chronic illness, that you advocate for yourself regardless of the feelings of the medical staff. If you are not receiving the appropriate care you require, then it is best to seek alternate care elsewhere. Take your medical care into your own hands and make sure you know what your needs are. You are your best doctor.

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