When the Chronic Illness Monster...is You

You know, many of us chronically ill/disabled folks complain about people who are inconsiderate/insulting/disbelieving/offensive/etc...And in many cases we are justified in calling out such behaviors and advocating for ourselves and others--we are not any less deserving of courtesy and respect than those who are healthy.

But on the flip side, we can also sometimes be at fault or inconsiderate and self absorbed--being chronically ill may make us more empathetic toward others, but it doesn't mean we're always "on" with it...and boy, have I heard or seen posts from some of us who consider themselves blameless when they say or do some ugly things, because "I'm so miserable, of course I'm b****y! What do people expect?"
Or who complain about people not making an effort to be in our lives...and don't notice the ones who were there quietly slipping away because WE didn't make an effort.

I'm not talking about an effort to meet expectations that our illness makes unrealistic; I'm talking about things like a text now and then to ask THEM how they are (none of that "but I'm worse off than they are!" crap. Of course we think they are if they're healthy...but don't we know damn well looks are deceiving? Everyone has some kind of struggle, and what they're dealing with may seem small to us, but it isn’t for them); a call to ask how something they're involved with went; an effort to get together on one of our "good" days, even it's only sitting on their couch.

I've been guilty of it recently--not being a good friend.
And worse, it was with my daughter, who has some health issues and an almost-4-year-old, but who has made more effort and time for me than I have over the last little while.

And it's so, so easy for us to put things off when we are struggling...that phone call you'll make tomorrow if you feel "better," that text you forgot to send today, that message on Facebook to the friend across the globe who is dealing with a problem, that attempt to reschedule plans you had to cancel with your family...that can wait another day, right? Because you feel just hideous right now and your depression is raging...one more day won't hurt.

But it CAN  hurt.
It hurts them. Especially if they are the ones who have given us unconditional support and we put them off like an unpleasant task because our bad day is priority...and they are the ones who always give us consideration on our bad days.

Our bad days are far more numerous than our "good" ones. How many do we continue to put off the things we don't feel up to?
People are not things to put off.
We think we know that...Of course they're important to

us.

But do they know it when we don't make sure to show it?

We always think there's time...until sometimes there isn't.

Luckily, I woke up and realized there might be more than just her being busy with her own life that was causing a distance between us...and that it might be me. And I asked. And she came over and bitched me out good. 

And instead of justifying it with an "I've been miserable and depressed for the last 3 months," I agreed that I was an inconsiderate b**** and had been a lousy mom and grandma...because I was.
No amount of being sick and depressed excuses it.

Luckily, she is probably more forgiving than I tend to be.
Luckily, nothing happened during that time that makes reconciliation impossible.
Luckily, I can see what a jerk I was to the people around me...the ones who care most. I can see that I adopted the "It's okay because I'm sick" mindset that I've always despised in others...and I can admit it to myself and those who I care about.

I've been a jerk.
Luckily, I have people who will tell me when I am one, because they are what keeps me real.

And last but not least, luckily she was okay with this being turned into a blog post, because hopefully it'll help keep someone else real.

Don't be that jerk because of your illness. It doesn't give you a free pass. It just makes you an unlikable ass.

What Does Chronic Migraine "Look Like," Anyway?

Chronic migraine is defined as 15 or more pain/migraine symptom days per month, but for quite a few of us it progresses to much more–daily or 24/7 symptoms and suffering.
It’s also called an “invisible” disorder, meaning you can’t see it, which often leads to skeptical reactions from medical professionals, employers, coworkers, and sometimes even friends and family.
It’s a bit odd to me that so many disorders and diseases are referred to as invisible when their effects wreak such obvious havoc on our bodies and in our lives. I tend to believe that they can be visible…for those who wish to look past the surface.
Here are some of the things chronic daily migraine looks like to me.

It looks like fighting to prove you’re disabled to those who can’t see it.

It looks like cancelled plans for the umpteenth time.

It looks like friends who stop inviting you out, but who can’t or don’t come visit you.

It looks like days in bed in the dark when your family is in the living room watching TV, laughing, and talking.

It looks like a messy house, unwashed dishes, and sitting on the couch in pjs wishing you could clean it up but knowing you can’t.

It looks like days missing who you used to be and what you could once do without planning exhaustively for a bad episode.

It looks like a beautiful day outside with you looking out the window from your bed.

It looks like feeling worthless and alone.

It looks like unbrushed hair and no makeup, because no one is coming to see you or you can’t tolerate visitors and you can’t stand the pain long enough to get pretty (or passable) anyway.

It looks like missing time with your grandkids.

It looks like people who think or say “you can’t be THAT sick all the time” or “aren’t there treatments for that?” or “God won’t give you more than you can handle.”

It looks like prescription bottles and a medication schedule and side effects and treatments no one would volunteer for unless their disease was much worse.

It looks like suggestions to “cure” you that range from “have you tried cutting ____ out of your diet?” to “I hear this body piercing gets rid of migraines” to “you should exercise more” to “doesn’t sex get rid of headaches?”

It looks like being asked “you still have that?” after 5 years of telling people what “chronic” means.

It looks like feeling “okay enough” to do laundry OR do dishes, but not both and definitely nothing more.

It looks like people who say “but you LOOK great!” or “but you don’t LOOK sick!”

It looks like countless medical tests with inconclusive results because there is no test to prove the existence of migraine disorder…only ones that rule out other possible causes.

It looks like explaining for the thousandth time that migraine is a genetic neurological disorder that affects the entire body and NOT a headache.

It looks like rescheduling a doctor appointment because you’re too sick to drive.

It looks like people sniggering behind you about “What [drug/other speculation] you must be on” because you can’t walk straight courtesy of aura or vertigo or both.

It looks like disbelief when you list your symptoms, diagnosis, and pain level at the ER.

It looks like uninformed and under educated medical care unless you see a specialist.

It looks like inconsistent or rationed treatment because of the expense of medication and specialist visits.

It looks like a years on end long list of ineffective treatments you’ve tried and that have failed.

It looks like someone who had a perfect 4.0 GPA feeling dumbed down because she now has trouble finding the right words, remembering things, and making once-easy connections.

It looks like your specialist telling you very gently, “There’s not much to try beyond this, and these are the odds it will help…but even if it doesn’t I’m not giving up on you.”

It looks like depression, suicidal thoughts, and anxiety about the uncertainty of each day and the future.

It looks like new symptoms cropping up and surprising you unpleasantly.

It looks like your mother telling you that the birthday gift she’d like most would be you getting to have a good day with less pain.

It looks like your boyfriend feeling helpless because he’s a “fixer” and he can’t do anything for you but be there (or if you are a grumpy sick person on really bad days like me, leave you alone).

It also looks like your boyfriend learning about your disorder and patience and limits right along with you.

It looks like learning to live with a much-limited sex life.

It looks like finding new ways to define yourself and a new idea of self worth.

It looks like smiling in front of strangers or people you don’t want to worry as if the pain and other symptoms aren’t breaking you.

It looks like finding the beauty in small things.

It looks like learning to appreciate small accomplishments you never would have thought twice about otherwise.

It looks like bad days when you envy those who can afford to go to the doctor for checkups and preventive care while you are debating if you can afford to take your last abortive dose for the month…mid month.

It looks like a repeated cycle of the stages of grief in no particular order as you grapple with the old life you lost and acceptance of the life you didn’t choose.

It looks like learning to cherish the good moments and to hang on to them for all they’re worth as a buffer against the bad and unbearable days.

It looks like nothing to those on the outside looking in and everything to those living it.

It looks like me.

And it looks like him…and her…and millions of us struggling every day with something no one else can see.