Friday, March 10, 2017

Isolationist, against my will

One of the hardest things about chronic illness is the isolation.

First of all, there's the emotional isolation.  This comes in all flavors.  The feeling like doctors and other medical professionals don't believe you when you try to communicate your symptoms, the constant implication that this is all psychosomatic at best or an attention grab at worst, the struggle against scripts (with their own undesirable side effects) to cover up symptoms rather than seeking the cause, the body shaming (if you're at all overweight, doctors will blame your symptoms on your weight and attempt to fat shame you into excessive exercising and weight loss pills)... I could go on here, but I won't.

There's the 'you don't look sick' phenomenon that permeates all of your social interactions.  Family, close friends, co-workers... you name it.  You don't look sick, so can what you're going through really be that bad? Cue the suspicions of psychosomatic illness/Munchausen syndrome.  We may be chronically ill, but we don't miss the side eye or even the thinly veiled comments.

The brain fog can trick you into thinking you responded to that email, or that you actually texted someone you meant to text, or that you sent that note (It's not just you - brain fog eats reminders about bills and appointments, too!).  The brain fog can also make you forget all the thoughts you had to reach out to people.  Your body is focused on surviving and it literally steals away the energy your brain needs to remember all the things.

And of course, there's the actual emotional toll that is taken by battling something physically all the time.  The mourning for the life you used to have, the life you wished you currently had and the future you may never get to experience.  Mentally bracing yourself for all of the interactions I described above.  The frustration that comes from exhaustion at the most basic of activities like vacuuming or folding a load of laundry.  The uncertainty of what you will or won't be able to do on any given day, because your body may not cooperate with your needs or your household agenda.  The feeling like you're letting down your family for not being able to do what needs to be done.

That's all internal and you'll just have to take my word for it (or the word of another spoonie, if you care to ask them).  Then there's the actual isolation.

When you don't have the energy to clean your house, or exercise (not even a walk around the block, let alone get to a gym), or shower (which happens - showers are EXHAUSTING), you don't have the energy to make plans, let alone keep them.  Or you have the energy to take a shower, but then have to sit down for the next half an hour before you can take the towel off of your head and get dressed.  Forget blow-drying your hair!  It's hard to get out for coffee or dinner.

And maybe the most frustrating part is that you need interactions like this to stay sane.  To not spiral into depression (a common complication of CIs of all types).  To try to focus on why you still go to the doctor, do your therapy, take the meds/supplements, live through the constant barrage of blood work and tests, to struggle with the financial toll all of the above takes.

It takes interactions like these to remember that your life hasn't always been what it is in this moment and it doesn't necessarily have to be like this forever.  And that's what your struggling toward: the return of some normalcy, even if just a little.

If you know a spoonie, I would ask this:  Text or email them.  Send a card, if you're inclined.  Make a FaceTime or Google Hangout date.  Let them know that you're still there for them even when they can't go shopping or run around town or take a girls trip.  It would mean the world to them.