as small as a world and as large as alone

5:57pm June 9, 2014

lunar-lavender:

Dear normally-abled people who like to tell me to “never give up hope” regarding future research into and potential cures for fibromyalgia,

Holding out hope is like holding out a heavy stone. It wears you out, accomplishes very little, and mostly just leaves you sore. I get that you’re trying to be positive. I really do. And I appreciate that. But what you need to understand is that when I say I’m not holding out hope for a cure, I mean I am moving on with my life. I am not sitting around waiting for some magical fix to fall from the sky. I have decided that the best use of my energy is not running around trying every possible remedy just in case one sticks (most of which are, let’s be real here, dubious at best), but to actually accept and live my life as it is right now.

I am not ashamed of that decision. I think it is the best one I can make in my circumstances. Not hoping for a cure does not mean not hoping at all. I have many hopes, and I can fulfill them even with a chronic disease. I think that’s the point you’re missing: Having an illness does not make my life stop, and I do not need to be ‘cured’ in order to keep living that life. I am still a person who is changing, thinking, and growing. I am proud of the changes and growth I’ve made. Being told over and over that I “shouldn’t give up hope” and that “someday they’ll figure out how to cure it” invalidates what I’ve accomplished so far while having my illness.

I’m not waiting to be “fixed.” I am a whole person, right now, and I am moving forward with my illness, without wasting any energy clinging to false hope. I have plenty of real hope already, thank you.

Signed,

A person who has fibromyalgia, and is no longer bothered by its being incurable; so why should you be?

All of this.

And all the more do I mean it now that I’ve found a treatment that has been so successful that some people are treating like a miracle cure.  This is still not how I live my life.

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