Learning to accept, cope with, and learn from her rare disease

Something I often think of is the life I lived before chronic illnesses. I was athletic and outgoing, always laughing and smiling and spending time with my friends and family. I didn't have a care in the world because I was healthy and strong. Reflecting back on those good times can make one's heart ache with a longing for what was once had.

However, that doesn't mean you cannot obtain a happy life with chronic illnesses. The world, I have come to discover, is still yours for the taking. So long as you have enough faith in yourself to reach out and grab it.

An emotion I continuously push away is grief. I refuse to give in to the overbearing sensation of sadness these memories tend to conjure up within me. People tell me how inspired they are by my story, how my strength to remain optimistic during trying times encourages them to do the same. However, what people don't see is a girl crying her eyes out to her mother when she can barely concentrate on her homework because her brain fog is clouding her memory. They don't see a girl who feels as though she ran a marathon when in reality, all she did was take a trip to Target just to get out of the house despite the fact the car ride made her feel worse.

What people don't see can be deceiving.

I used to believe that feeling these emotions - sadness, frustration, vulnerability - was wrong. I felt as though I was the one at fault. I felt as though I was lying, not only myself but to those who called me an inspiration, who looked up to me because I was able to keep my spirits high during trying times. I felt like a failure.

There are many times I feel guilty for grieving the girl I once was. I am no longer that girl without a care in the world. I am now consciously aware of my body, of the struggles it faces day in and day out.

I will never be that girl again, and that is okay. I am stronger, wiser, and more mature now. I love the girl I am today and have come to love her body with all its defaults. I have learned that it is okay to grieve, to cry, to crave the life I had before chronic illnesses waltzed into my world. But I have also come to accept this life as my new normal.