What I Wish Healthy People Knew About Being Undiagnosed

grace-and-ace:

twelvesclockworksquirrel:

OK, see, here’s the thing. Most people with chronic illness wait years to get a proper diagnosis. They know what we undiagnosed peeps are going through. They can empathize with the worry, the frustration, the impatience, the hope and hopelessness roller coaster. They get it.

But I don’t think a lot of healthy people quite understand. 

Just because my illness hasn’t been named yet, it doesn’t mean I’m healthy.

Not knowing WHY I have symptoms doesn’t make the symptoms go away. It doesn’t mean I’m not dealing with a lot of shit. 

And I’m dealing with this shit not sure where to turn for support (not a lot of support groups for “I dunno, but shit’s going sideways”). I’m dealing with this with no treatment options. The best I can do is try to manage my symptoms with everyday, at-home methods (that may or may not make any bit of difference). 

I’m dealing with an unpredictable and often debilitating mystery illness. I’m going to doctor appointment after doctor appointment and test after test and having to explain my medical history over and over again which drains what little energy I had left. 

So…

If someone you know says they’re sick, and they’ve been sick for months or years…for the sake of all that is good and beautiful in this world, just believe them.

If someone you know is sick and they don’t know what they have, just trust them that while they may not know the name of their illness, they most certainly do know how it affects them and what they can and can’t handle doing (even if that changes from day to day).

If someone you know is struggling with a chronic mystery illness and you want to be a good, supportive friend just be T.H.E.R.E. for them.

T– trust them when they say they’re sick

H– help if they want your help (but don’t always wait to be asked for help, offer specific tasks you can do like unload the dishwasher, or take their dog for a walk)

E– expect nothing (if they want to talk about their health, listen, but nobody owes you their private medical history)

R– respect their limits (if they say they can or can’t do something, believe them)

E– endure (no matter how many times plans get cancelled last minute, not matter how long diagnosis takes, no matter how frustrating you are by their limits, I promise it’s even more frustrating for them so be patient)

Also, pro tip: DON’T TELL THEM WHAT YOU THINK THEY HAVE AND HOW TO FIX IT WITH YOGA/GREEN SMOOTHIES/REIKI/WHATEVER.

not my typical topic but this is Exactly what i’m going thru and its too relatable not to share