Wednesday, November 25, 2015

People with Rare Diseases need Understanding from those around them

Society needs a new platform of understanding of rare diseases.

People with rare diseases often end up being the expert in their particular disease, but it is a very lonely road to travel. And most doctors do not like what they call “google patients”. But with a rare disease, how can we not become detectives of our own illnesses, constantly hoping that there is a cure out there for us or even finding a cure ourselves through our research. Just maybe a new look with ignorant eyes can see something that would be easily overlooked by the researchers. The difference between people’s responses to me when I tell them about not having an immune system and telling them about the breast cancer is like chalk and cheese. While you can’t see either illness from the outside, almost everyone without fail reacted with compassion and understanding to the breast cancer. They do not even look at me when I spoke about my absent immune system. I can see in their faces that they either don’t want to know or they think that I must have AIDS (oh, what skande) because AIDS has something to do with immune systems. Rare illnesses also deserve to have the same platform of understanding.

To all those who have a rare disease – you have my immense respect. It isn’t easy to paddle alone in a canoe. When we hit the rapids all we can do is hold on. Tomorrow the river may flow more gently, and we may have the energy to be grateful that we made it through to another day…one that holds the possibility of beautiful and magical moments.