I am more than my disease, but it does dictate my life.

I am chronic illness sufferer, but that is not all that I am. I am a strong woman, an artist, a scholar, an open heart, a shoulder cry on, a ham to make you laugh, a kind old soul who is a hopeless romantic, and an empathetic person that takes everything TO HEART. I am more than my disease but realistically; how I navigate life is directly decided by my disease, no matter how I try to circumnavigate it…it is at the helm.


My disease tells me when I can get out of bed and when I can go to bed.

My disease tells me when I can eat and what I can eat.

My disease tells me when people can rely on me and when they can’t.

My disease tells me to cancel plans and stay in a dark room.

My disease dictates my weight, and my ability to exercise.

My disease dictates what I remember, short term wise.

My disease dictates chunks of my memories. There are portions of my life I will never be able to recall.

My disease gives me anxiety Every. Single. Day.

My disease makes me feel like I am lost often, that I will never catch up, and never live up to my potential.

My disease makes me feel like I need help all the time, and that I can’t function as an adult the majority of the time.


My disease scares me, everyday I am fearful.

I fear that people will get tired of helping me, that I ask for too much, that people may think I take advantage of them.

That I have to prove myself and what I go through since it is not shown as a physical deformity.

That people talk about me, and all I want is to be liked, accepted, and understood.

That I am too afraid to stand up for myself and think people see my disease as a crutch.

That my feelings get hurt.

That when I get down in the dumps about things it is so hard to get back up.

When I hear people say things gossipy…I cannot stop crying.

That I am trying my best everyday, and I need all to be understanding and patient.

That I don’t want to be stuck at home on the couch almost everyday, but it happens.

That I watch TV because being alone in a quiet house more times than I like is lonely.

My disease is lonely.

Pain is lonely.

I want nothing more than to be able to be normal. A normal functioning contributing person to society, and I am trying desperately to find a cure so I can.

I want all to understand, this is a hard life, and I am trying.

For goodness sakes I am trying.

I am so much more than my disease, but it is the puppeteer pulling the strings everyday. I do what I can and I never want to be made to feel bad for that. Fear is a major part of any chronic illness/disease, yet I am still hopeful. I long for the day when I can finally break free. But until then this is my reality, and having understanding people around me can make it easier, it can remove the stress of worrying what others think. I know that shouldn’t matter, but being sensitive makes you take everything to heart. So please, be kind. I try my best to do so towards others, even if they have hurt me.


That I am here in Hawaii for a longer than normal time not because “vacation” but to see if this environment will somehow make it so I can do what I desperately want to do, start my career. This trip is a mission, and thanks to my loving and wonderful  boyfriend he made it possible for me to be here, we want this time stress free for me, to see if maybe, just maybe I can get a little relief since these last 9 years I have been out of luck. And also thanks to my lovely friends here in Hawaii, Jenel and Adam, Araz and Masis, and Brooke and Clint for being just as caring and understanding.

It has been hard being away from my mom, she is my caretaker over these last 9 years, and I know it’s hard on her too. I miss her dearly. She has done so much for me, and has had to be there for me more than a parent would have to when their daughter is 27. I am supposed to be self sufficient, yet I am not. I get embarrassed daily because of it. I want to just get up and go, but I can’t. I have to plan, prepare and 9 times out of 10 reschedule. Do you know how embarrassing it is to say “no, sorry I can’t drive” or “no I am not working”. People judge you so hard, then there is more anxiety. I always feel like in some way I am letting someone down. I want all my important people to be proud of me. They reassure me everyday that they are, but I still get scared.


Fear and disease go hand and hand. No matter how hard I try to pretend like its not there, it is and it manifests itself in anxiety. You try and ignore it but it always creeps up. I just hope all that read this takes in what I said, reflects, and works to be there more for people in their lives suffering. Just be kinder, please. To everyone. There is always a reason behind someone’s actions or reasons why they do things the way that they do. Never assume anything. Approach all with a clean mind and open heart, you could save them. All those sufferer, remind yourself, “I am a warrior.” and some people will just never understand.

One thought on “I am more than my disease, but it does dictate my life.

  1. I will always be there for you. We will continue to look for new treatment and ultimately a cure! I am so very proud of the woman you have become.


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