Learning to be My Own Advocate with Chronic Illness

Today was a day, friends. A very long and tiring day. Some people think that dealing with chronic illness is not that hard. “It can’t be.” After all, “you just lay around all day right?” “Read, maybe watch some television. I wish I could do that all day” they say.

Little do they know that living with chronic illness is a battle. Each day is a fight, from fighting our own bodies to fighting with doctors. Then there is my personal favorite, fighting with insurance companies. THAT takes the cake.

Today I learned a very tough but important lesson and put this skill to practice for the first real time. I advocated for myself and my needs, and took my illnesses and my recovery into my own hands. Now, don’t get me wrong. I do things on my own. I call to refill my prescriptions when they are out, and then drive to pick them up. I schedule my own doctors appointments and make it to those on time. But the hard stuff has always been left up to my mom. Not because I am lazy, but because I am sick. It used to be that I could not do a whole lot thanks to my illnesses. I was pretty much house-bound, spending most of my time lying on the couch and in bed. I was not in a place to fight for my health. Now, I am a little bit stronger (okay, from where I was, a lot a bit stronger), and two years older, in my mid twenties, and it is now time to take ALL matters into my own hands.

I have been trying to get this genetic test done for 6 months now. I have gone through one appeal process and need to go through another. My doctor strongly believes this test will help us put some of these last puzzle pieces together, and I desperately want finalized answers. I need this test. Anywho, this test is…pricy. HIGHLY pricy, and with being a student, I just don’t have the means. Today I was on the phone for an hour with insurance and the people that have my blood just sitting there and waiting to undergo testing. I voiced my concerns to these individuals. I asked if there was anything else that could be done for me since insurance might not cover this test. I explained I am a college student who has plenty of student loans and yet I really need this test done. They expressed sympathy and were very kind. They did what they could. And despite the frustration I was experiencing, the horrible brain fog that was just completely clouding my thinking after a while, and the persistent fatigue, I accomplished a couple of things. Not only did I handle this situation all on my own, going back and forth with the various companies trying to sort through this issue and get yet another appeal going, but I advocated for myself and for my health. I took matters into my own hands. It was so hard. After a while I felt my brain turn to mush. But, I still did it.

This is an important lesson for any chronic illness fighter to learn – advocating for oneself. We have to be our own best and first advocate. Sure, we may need to rely on family members and friends every once in a while, especially when we are too ill to deal with it on our own. But we need that practice and we need to build up that skill of fighting for ourselves, for our health, and for our quality of life. This can be super difficult, especially when we don’t feel well. This is also the reality of living with chronic illness. Dealing with illness and all of the obstacles that come with it is a full time job in itself. Don’t let anyone tell you it’s not.

How do YOU advocate for yourself and your health? Let’s get the discussion going!

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