What the World Doesn’t See

I think one of the hardest part about dealing with chronic illnesses, is everything we have to do to stay alive, that the world doesn’t see. Like scheduling (and driving to) doctors appointments and lab tests, organizing and figuring out how to get the right medical records to the right places, following up on various medical plans, picking up medication, and the list goes on and on.

When you have as many serious medical diagnosis that I do, there isn’t just one doctor to follow up with on a regular basis. There’s at least 5, and usually a scattering of a few others to see on a yearly basis.

I don’t like to complain, because I know how lucky I am to still be alive (and how much the people who care about me sacrifice to keep me alive),

but I see it some people’s eyes sometimes…Thinking I’m just kicking back, causally working part time, milking the system (or whatever..I have no idea what goes through mean people’s minds).

They just don’t know what it’s like to be us.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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