"....you have been gifted an elaborate jigsaw puzzle that came in a blank box so you don't even know what the puzzle should look like AND it's missing pieces..."
If you are living with chronic illness it is likely that you have multiple disorders or diseases. Possibly some that are sub-clinical, or maybe you have some that are not diagnosed yet. Maybe they won't show up on your blood test for years. Maybe you get flare-ups and your bloodwork is inconsistent. Maybe there is a very specific test required that could lead to that "Aha! moment" but your doctor has no clue it exists. That doctor, instead, will likely do years worth (not an exaggeration) of testing so they can rule something else- something more obvious. They will send you off to specialist after specialist and none of them will communicate with each other and at the end of it all you are either back to square one or you may get lucky and start acquiring some puzzle pieces. Rarely do you walk away with a completed puzzle. A beautifully satisfying display of your efforts that gives you a clear diagnosis with a clear treatment plan. Rather you are left with health that is not uncomplicated and symptoms that are complex...you have been gifted an elaborate jigsaw puzzle that came in a blank box so you don't even know what the puzzle should look like AND it's missing pieces.
You are your best advocate
The last few years has made me a masterful dissectologist (yes, I just Googled "formal name for a puzzle solver). I have spent countless hours at the doctor's office, the hospital, on the phone with doctors, with insurance, emailing specialists, reading journal articles, case studies, attending conferences, reaching out to colleagues, the list goes on. It seriously is a full time job. And you don't get paid and rarely is it satisfying because even if you get some answers you are usually left with more than you started with. Basically, anytime you find a puzzle piece hiding under your couch you have a brief moment of excitement until you realize that piece belongs to another puzzle. Despite the added stress and frustration of this it is incredibly important for us to do. Our health care system is not designed to educate us. It is not designed to proactively help us and it is DEFINITELY not designed to be investigative. Please ask questions. Please insist that something is not right. Please call a doctor out if they are gaslighting you. If they clearly just don't get it or if they tell you to (my favorite) "just lose weight and change your diet" or (actually no, this is my favorite) "just calm down. Lower your stress" then go find a different doctor. Keep doing your own research. Keep, being your best advocate. You know your body better than anyone. Don't settle for a partially completed puzzle. Be patient though. Collecting all the pieces will be quite a journey.
Comments