Advocates on Steps of Congress 2013
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Change

Erica Sobrino
Erica Sobrino

My life with Systemic Scleroderma.

I was diagnosed with Systemic Scleroderma is 2014.
Everything in my life has changed since then.
I think that's the biggest thing I would want to stress to the newly diagnosed or those who have never known anyone with the disease.
Things change.
The way people will look at you will change. People will say you are lazy. They will say "You look fine to me" Medical professionals will think you are crazy or drug seeking. Some people will start to treat you like you are fragile.
My career has changed. I was working as a certified nursing assistant and going to school to be a registered nurse. Now I am graduating with a general education degree and haven't been able to work since June of last year.
My social life has changed. There are only so many invitations you can decline before the invitations stop coming.
But not all changes have to be bad.
I have changed the way I look at myself. I used to believe that I wasn't very strong. Now I know I am. I fight a battle against severe pain, exhaustion, depression and isolation. I am still here. I am stronger than I ever knew I was.
I have changed the way I look at others. Before, I thought that if I couldn't give to others, they wouldn't want me. Now I know that some people want me, just for me. Because I am. Not just because of what I can do. And that those who only wanted me around when I was more useful to them, we're never really worth my efforts in the first place. I've learned to appreciate good people.
I cherish moments more deeply than I even did before. We are conditioned to "look forward". Now I enjoy each good moment as it happens.
If you are just beginning this fight, take heart, things will change. Some changes will be hard. Some changes will be for the better. So in your scariest moments, your pain, your depression, hang on. It will change.
In your best moments. Your pain free days, your strong days, take a deep breath and cherish the now, because things change.
If someone you love is fighting this disease, you can be the change. Don't stop inviting. Don't stop asking to help.
If you are just now learning about Scleroderma, you can change everything. Tell people about us. About this disease. Change the way you look at people. Don't assume we are lazy, that it is all in our heads. Tell others to do the same.
Because we are not lazy, we are not crazy, we are warriors.

 

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