Just because I look okay, it doesn’t mean that I am

This is me, from the outside: someone who gets up every day, showers and puts on makeup, brushes her hair and dresses in reasonably neat clothes.  The house is usually clean, dinner is on the table, the cat is fed, the child is clean and dressed and happy.

This is me on the inside: every day is a struggle.

Most days I deal with pain on some level.  Today the pain is worse due to shingles.  Most days I’ll have some level of joint pain, which can pretty much be in any joint.  My wrists are usually aching, as is my jaw.  My back is invariably hurting somewhere.  I often have a headache.  Muscular tightness and pain is always there in the background, like static.  Fatigue is always there, waiting to drag me down.

I’m fairly used to the background pain and fatigue.  I have fallen into a bad habit of just taking painkillers and caffeine and forcing myself to just keep going.  Keep smiling, keep pretending that I can do everything.  Keep hiding.

And you know what?  I’m sick of it.

I’m far more functional than I was several years ago, when I was sick enough to be on the disability pension.  I don’t know if I’d qualify for the DSP now, but I’m certainly not capable of working a traditional full-time job.  Everything is still a struggle, a careful balancing of spoons.  I have to be very, very careful to guard my sleep, and many days I need to nap in the afternoons to have enough energy to get through the evening.  I have to take handfuls of pills every day to suppress my immune system, to sleep, to deal with depression, to deal with pain.

I look functional on the outside, and within my limits, I am.

And because of this, most people assume that I’m okay.  They don’t ask if I need help with anything, they don’t ask me how I am (there are several amazing exceptions to this who are bright points in my life).  Now, I don’t want to dependent upon people, but I would like some damn acknowledgement from time to time.

Here’s a truth: without my mother helping out (a lot), I wouldn’t be able to be a mother myself.  Sometimes I wonder if choosing to have a child was the best idea for me.  Sometimes – if I am honest – I really resent all of the work I have to do, keeping the house and the kidlet.  Sometimes I want to run away.  If not for my mother helping me out (and giving me time to write and read – I would pretty much be lost in depression without that), I would have literally had a mental breakdown.  As it was, even with help, I suffered badly with postnatal depression, to the point where I’m pretty sure there was some psychosis involved.  I’m constantly torn as to whether I want to have another child or not.  I’d like the kidlet to have a sibling, but I don’t know if I have it in me to deal with two kids.

That aside, I am angry.  I am angry that our society conditions us to assume that someone is okay because they look okay.  My mother has had several people tell her to her face that she looks fine, therefore she must be over grieving her husband of 40 years.  And I am tired of the mothers who smile and tell everyone that everything is okay, then go home and drink/weep/gods only knows what to deal with their stress.

You know what?  Everything is not okay.  I need a lot of support to keep my life as functional as I do.  I never know what any day is going to be like.  And I have many, many friends who are the same.  Look at many of us, and you won’t see what we deal with.

Here’s a suggestion: if you can’t see it, then ask.  Ask that person who you know has an invisible illness how they are.  Don’t let them become more invisible than they are.

Mirrored from Stephanie Gunn.