Ah, my little workspace, how I have missed you.
Interestingly, these post-illness life reboots are something I haven't encountered in all my reading about chronic illness. There's lots out there about missing out and fatigue and trying to help people understand invisible illness, but I don't believe I've seen anything about the starting over (physically, socially, etc) that happens after every episode or relapse. After dropping out of circulation for days, weeks, or even months, you have to maneuver your way back into your commitments, your friendships, your schedule, and sometimes even current events. And this isn't something that you have to figure out one time. You are faced with this jockeying for position every time you return from a major illness (at least until you quit trying and withdraw altogether, which can be a real temptation.) It's discouraging, intimidating, and isolating. Basically, it sucks. Every time.
First, there are the logistics. You don't generally just wake up one day feeling hale and happy. In fact, most chronic illness patients exist more on a sliding scale of wellness that never quite reaches "All Better." So deciding when to go from confined-to-bed to back-to-normal can be tricky. How much of your "normal" workload/social schedule can you even manage? Because you don't want to cause a setback in your recovery.
Then you have all the people who have had to make other arrangements when they couldn't rely on you. No matter how much they care about you and your health, these folks (whether they are work, church, or school colleagues) need someone they can depend on to get the job done, and when your ability to deliver is frequently a big question mark, it can be challenging to convince them to let you back in on the work. This situation can be painful to navigate, as there is plenty of guilt and frustration to go around for both "sides." I never feel anger for the person who's reluctant to let me back in, but I do feel incredibly guilty at having failed them and unbelievably frustrated at my body's repeated betrayals. I'm organized and goal-oriented, and illness is neither of those things.
And let's not forget relationships. There is a hard truth about chronic illness: When you're sick and confined to home or bed, the outside world keeps turning. Friends still meet for drinks. Couples still have dinner parties. Movies are seen in theaters by those who are well enough to venture beyond their bedrooms. While certainly, there are those close friends who make the effort to see and encourage you through your periods of incapacitation, it can be very challenging to maintain any sort of social circle when you're constantly having to drop out of the loop.
I have found this socially isolating aspect of chronic illness to be intensified by having special requirements or needs even when you are healthy. Because of my Celiac, I am very limited to where I can safely eat, and so much (a dizzying amount really) of our social interaction is built around food. Meals or snacks are incorporated into nearly every church event, club meeting, or even meet-up with friends. So, even when I'm not pulling a bed-ridden disappearing act, I'm having to manage one of my illnesses by saying no to numerous social events, and it doesn't make for a very full dance card.
Lastly, these repeated beginnings lead to a sense of disconnection. Talk about feeling irrelevant. You weren't there. You don't know the funny stories, the inside jokes. New shit has come to light, and you missed the memo. And to make matters even more awkward, every one you see wants to talk about --you guessed it-- your illness. You look great! You look tired! You're so thin. Should you be out yet? I don't know how you do it. People are just being kind, and you know this, but when you're trying to make a comeback (for the millionth time), often the last thing you want to talk about is your weight loss or meds. All you want, really, is just to be in again, to not be marked with that invisible "S" on your chest --Sick.
So here I am, yet again, starting over. My writing, my commitments, my relationships, my life. While I was on pause, the rest of the world continued on at what seems like double speed, and nobody recorded what I missed. Thankfully, this was one of my shorter vanishings, but I live daily with the fear that I will vanish again without warning, and sometimes, I wonder if I'll ever despair of the fight to reinsert myself into my own life.