“Invisible Illnesses” are considered such due to the lack of outward “tells”. Those suffering from such illnesses aren’t typically in wheelchairs. We aren’t always considered disabled. We don’t look sick. So, our diseases are deemed “invisible”.
But, to anyone dealing with an “invisible” illness, or to anyone involved in the life of someone dealing with an “invisible” illness, it’s really everything but invisible.
As I write this, I’m well into my 12th hour on my couch for the day with severe abdominal pains. I haven’t eaten anything. I can’t decide if I want to throw up or not. And this has been occurring 1-2 times a week since I started my Humira treatment – which was meant to put me into remission. I mean, the frustration alone is just overwhelming.
An episode like this typically starts in the early morning hours, usually 3-4am. It wakes me up, to which I grab my pillow and a couple blankets and I set up on the bathroom floor. I might throw up. I might not. But the nausea is almost unbearable. I’ve taken 2 gas-x pills at this point, and I’m sipping on pepto, chasing it with water, and trying not to gag. My cat eventually finds a spot near me to keep me company.
Sometimes Kyle is home and he brings me what I need, and has even made middle-of-the-night trips to our 24 hour Walgreens. Other times, he’s working and comes home to find me like this –
And the sad truth of this photo, is that this is peace. I went to the bathroom feeling all sorts of miserable, and I actually fell asleep. After taking this picture (he thought it was cute!) he woke me up, and I had to ask if I was actually sleeping, because it literally never happens. The pain actually subsided for long enough, that I was able to fall asleep.
Normally, in this situation, my head is bobbing as I nod off into the toilet bowl for the pain to return and wake me back into a groaning mess. Hours and hours later, the sleeping pills or the ativan (that I was hoping would put me out of my misery earlier into this ordeal) finally get the chance to shine and I get to sleep into the afternoon. So, the fact that sleep actually happened here and so early into it was incredible.
The options I had for GI specialists close to me were slim, so I decided to get lined up with a doctor an hour and half from me. That means any time I have an appointment, my mom drives 2 hours to me, and then we drive an hour and half to the doctor. Doctor appointments are literally day-long events.
Kyle has to administer my Humira because I still can’t bring myself to do it.
I sometimes have to miss work.
I miss get-togethers with friends and family.
I cancel plans. Dinners. All sorts of things.
I can’t get anything done.
I can’t stand up sometimes without having to double over in pain.
My family worries about me. Kyle takes care of me. My friends have to deal with it, too.
If you suffer from a chronic illness, everyone’s lives are impacted in one way or another, and they will be forever. Chronic illness is forever. And remission isn’t. You can be fine one day, and sick the next. A treatment plan might work for a few years, and then just stop working. I could be fine soon, and need surgery after surgery in 10 years. I could need surgery next week and then never feel my disease again. You just never know, and the unpredictable nature of it all is something that anyone in my life now and later will be faced with at some point.
There’s really nothing invisible about an invisible illness, is there?