If you're brave enough to fly

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.

Stephanie Burgis, who is an amazing writer, has written a great post about disability and the perception that many people have of those who are reliant upon disability benefits.

This is a subject close to my heart for an obvious reason: I have a disability, albeit an invisible one.  I was reliant upon a disability pension for the period of time between finishing my PhD and getting married (at which time I became financially ineligible for the pension.)

Over time, my general health has improved – because I’ve gotten better treatment, and because the pension and the financial support of my husband has allowed me to take the time I need to rest and to pace myself.  I don’t know if I would actually qualify medically for a pension these days, but I do know that I am still not capable of working a traditional full time job.  Just as I don’t think I would actually be capable of being the sole carer for my son.  Which is, of course, much more than a full time job.

At the time when I was first ill, you probably wouldn’t have noticed.  I struggled through the last couple of years of my PhD part time (and this was only because I had an amazing supervisor who gave me a lot of leeway, far more than most would – he would have been well within his rights to terminate my course of study).  My day looked like this: wake up at 6:30am, groggy from a night of medicated, broken sleep.  Drag myself through the shower, catch the train to work, force self to walk for 15-20 minutes from train station to my place of work (because things were far worse without exercise).  Work at a very slow pace for a couple of hours – really only doing about an hour of actual work at maximum, because my concentration span was completely shot.  Walk back to the station if I could, catch train home.  Arrive home at noon, collapse on the couch for the rest of the day.  Only eat because my mother cooked for me, since I wouldn’t have had the energy to do anything else.

Most people only saw me when I was out and about.  To the world, I probably looked fine.  I could walk (though I was reliant on a cane for a time – I suspect most people just assumed I injured myself, when it was for balance), I could work somewhat.  They didn’t see me crashed out on the couch, in pain and unable to think and sometimes to form sentences.

I’m lucky now, in that most days I am fairly functional.  As long as I’m careful with my sleep and rest and take my medication, I can write, take care of my son (with a lot of help, admittedly) and keep the house mostly clean.  And yet, I suspect that to the outside world, I don’t look any different to when I was really sick.

It’s not always obvious.  And of all of the people I’ve known who have been dependent upon benefits, none of them have been faking and all have been working as much as they could and, if possible, trying to get to a place where they don’t need benefits.

EDITED TO ADD: This is also why I’ve been blogging about my achievements every day again – reading, writing, exercise – to prove to myself and to everyone else that I’m not a slacker who’s bludging off my husband (and would possibly still be the government if I was still single).

Mirrored from Stephanie Gunn.