This is what chronic illness looks like... Yes - I’m smiling and I look “fine”, but I’m also exhausted (even though I haven’t done much today), my stomach is insanely inflamed, I’m only awake at the moment because my joints are KILLING me, and I just took a mouth full of medication (my evening pills). Could you tell that by looking at this picture though???
Lupus looks like: - Exhaustion that the normal person can’t even begin to fathom - Staying in bed all day because the fatigue and/or pain is so bad, you can’t function - An obnoxious number of specialists and medical tests - Pain that is, at times, unbearable - For some, effects on any/all major organs
Lupus is also: - Smiling through the pain - Getting up, putting your makeup on, and venturing out into the world - Laughing with friends when you can - Choosing to live as full a life as possible and embracing the good moments
Almost a year ago I moved from Maryland to Virginia. Being that I had been living in Maryland from the time I was diagnosed (and having had access to top quality doctors through Hopkins and many other brilliant minds in Maryland’s more metropolitan areas), I had NO IDEA what I was undertaking just from a health standpoint. Between finding all new doctors, doing my best to make it a smooth transition with treatments, and everything else that comes with a big move and starting a whole new job, it’s safe to say that I have spent the last year in a state of physical and emotional exhaustion to put it mildly. It’s been so exhausting, I still haven’t figured out how to put it into words.
I have yelled at more doctors than I care to own up to and woke up about 2 months ago and decided to get rid of all my specialists and start the hunt for ALL new doctors (with the exception of my cardiologist who is the most amazing human being). .
It hasn’t been all bad and I certainly don’t regret the move for a minute. Looking at this list of triggers (that is by no means all inclusive), just reminded me of all the flare triggers I’ve experienced just in this past year. But above all, it reminded me how - even under immense stress and pressure - I have stayed present and listened to my body, rested when I needed to, and did not allow myself to get defeated. Which, if you know my journey you know, is huge for me. .
We all experience periods in our chronic illness journeys that what we are facing seems insurmountable. Stay present. Stay steadfast. Find joy where you can.