Is it me? Am I the problem?

I grabbed this off Facebook.

It shows a behind the curtain glimpse of life with a serious, chronic disease.

The author conveys the depth of complexity and despair around disease management.

—.—

"Is it me? Am I the problem?"

Being a rare disease patient (and I’m guessing parent of a child with one), one of the BIGGEST things you have to learn is ADVOCACY.

To speak up for yourself — how you feel, and what your body needs.

Even though I have been in the ICU I have this horrible fear of being the “annoying patient.”

Does anyone else have this problem?

Like if you speak too much, you're going to end up with no help and no health care team at all?

How do you deal with this fear?

What do you think gave you this fear?

It’s a very real fear.

I get rid of doctors that don’t listen to me and treat me as a knowledgeable person.

And with doctors I’ll only be seeing once, I treat them with respect while still holding my ground. No sense losing my cool.

I know that we don’t always have the choice to fire our doctors.

This is why we must develop a loving, trusting, and respectful relationship with our inner wisdom. So we can act on it in the face of controversy.

Also know this is easier said than done, but it gets easier every time we find ways to honor our inner knowing.

—Anonymous

#disabilityrights
#specialneedsmoms
#specialneedsfamilies
#disabilityawareness
#raregeneticdisorder
#innerknowing