Voices Carry

Except that they don't.  At least that's what I'm finding about the caregivers of people with chronic illnesses.  

Chronic illnesses are often invisible illnesses.  There are typically no outward signs of Lupus, Fibromyalgia, Chronic Pain/Fatigue Syndrome, Dimentia, HIV/AIDS, etc.   Our Spoonie friends and family generally don't look sick.  As anyone who struggles with a chronic illness can tell you, they are sick, and they do need help.  That's where we come in->the caregivers. 

Caregivers of Spoonies are loved ones, friends, or family members that help out and pick up the slack when our person runs out of spoons.  That could be anything from an encouraging word or understanding ear, to washing the dishes, running errands, and babysitting.  By 'slack' I don't mean that our friends are slackers.  If anything, they truly wish they were able to do things for themselves. The one thing I hear constantly from my Spoonie is "I'm sorry (I didn't finish the laundry; I slept all day; the trash needs to go out; I didn't get to the store)." 

In those cases, it's up to the caregiver to step in and get it done.  Generally, not a big deal.  However, combine that with everything else you normally do and it may seem a bit stressful.  Especially if there's a bad flair up which goes on for an extended period of time.  My Spoonie's way of dealing with things like this is mainly talk therapy.  Sure, he occasionally sees a therapist (when he's felling well-she's actually taken to calling him at home for sessions), but his main talk therapist is me.  His Significant Other.  

As his SO, not only do I get to do my stuff, I get to do his stuff from time to time, and I get to listen to every infinitesimal thing that is bothering him.  He's also a bit of a narcissist, so virtually everyone/everything that isn't like him bothers him.  He got mad at me one day and wanted to know why I never ask how he's doing.  I shot back with, "I never ask, because you always tell me. I never have to wonder." 

I'm getting to the point.  Hang on. 

Because the stigma is slowly being lifted, people with chronic illnesses are more open to talking about their condition, what's wrong, and how it's affecting them.  Before, the standard answer was, "I'm fine." Now we have websites and social media accounts specifically for these issues.  I've read articles like What Spoonies Wish You Knew and Ways to Know You're a Spoonie.  It's a wonderful thing and should be talked about without humiliation.

But what I'm not seeing is what it's like for the caregivers.  

That's my point.

When I bring this up, I hear nothing back.  If I ask a question in a FB group, the only response I get is from Spoonies, not caregivers.  When I opened my own FB group, people thought is was for Spoonies.  I've asked questions on other FB groups and could hear a pin drop.  Why don't the caregivers want to speak up? 

As the spouse of a Spoonie, I know it's difficult. I know how tough it is.  I GET IT.  What I want to know is do others get it?  Am I the only one who feels like they're running out of spoons, also?  

No one will admit it.  No one will say that they are tired: tired of doing more than their share; tired of dealing with other people's problems in addition to (or in place of) their own; tired of what seems to be the SSDD.  Why?  Are not everyone's issues important?

Maybe it's guilt.  Caregivers usually are not dealing with pain, fatigue, depression, etc., so perhaps it's the remorse of complaining about your own problems when someone you love is suffering worse.  Or seemingly worse.

Maybe it's shame.  Are caregivers ashamed of their workload?  Are they ashamed of their Spoonie?  Are they concerned by what others might think about the situation?

Maybe they're so used to just plowing through (suck it up and move on, as I say) that they don't think about it.  Is it easier not to think about it?  Just push it down and ignore?  

Speak up! It's OK to be any or all of the following: mad, furious, sad, despondent, confused, lacking, annoyed, irritated, tired, exhausted, fed up, alone, not understood.

Caregiver mental health is important, too.  We need breaks, naps, food, meds, space, the occasional tequila shot, water, massages, therapy, shouting, yoga, prayer, and love.  If we don't allow for this, we may end up like our Spoonie brethren and then who would take care of us?  Self-care is not selfish.  

Breathe in.....breathe out.