Sunday, September 25, 2011

Stargardt's isn't something to be fixed!

Few months ago I saw the movie "Love and OtherDrugs". It's about a young woman and her struggle with relationship while facing Parkinson's. Although the nature of Parkinson's is much not related to blindness, but the idea of living and facing a disease is actually very similar.

Although we all hope for a cure someday, reality is there is none at this moment. It's a harsh reality to face for many patient's and often even harder to accept for family members. What I've seen and come to understand is that no matter how much you want your loved one to be better sometimes you just need to accept the disease as part of who they are and not force them to visit doctor after doctor knowing you will get the same answer.

Even when people know there's no cure, they still chase after doctor to doctor. It ends up being something you're trying to do not for the patient but for yourself. You want so desperately for your loved one to be better but ask yourself this question, IS IT SO BAD TO HAVE THIS DISEASE? Chasing after the same answer is tiresome and exhausting both physically and mentally. Yet many people with the disease will not refuse to see another doctor that their loved one has suggested because they don't want to kill their loved one's hope.

The best thing you can ever say to a Stargardt's patient or any terminal disease patient is to let them know you are there to support them and help make their life easier. Love them for who they are, even if it means they have a disease. Because when you chase after false hope, it tells them that they are not good enough because they have this disease.

No one wants to be sick, but when it is a part of you with no cure, it may be time to accept and love yourself even if it means you are sick. Having Stargardt's doesn't mean you can't live life, it just means that life becomes that much harder. But regardless of how hard it gets, find someone who loves you just as you are rather than try to "make you better". Because what they don't understand is you are good enough, you don't need to be better to be loved.

So stop trying to fix something that hasn't found a cure. Maybe one day there will be a cure, but until them accept that this is part of the patient and love them for who they are.

1 comment:

  1. My wife (of 18 mos) has stargart's, something I didn't grasp or understand while dating/getting engaged. We actually watched that movie a few months ago... It made me cry. I have since accepted my wife's disease but it has been difficult. I am worried that she will not be able to drive our children to soccer practice, etc. I am struggling to accept the situation, but I have found that telling her I love her and that I wouldn't leave her over her vision is important to her. I am glad you wrote this post.


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