I recently stumbled across a letter to those who do not have chronic diseases, which attempts to explain the unwritten rules of the lives of those who live in pain.  I nodded vigorously along with parts and shook my head with others.  And since this headache is in no hurry to evacuate the area, it seemed like a good time to write my own rules.

Things you should know about me, in regards to being totally physically jacked up.

1.  I hate the labels.  I have enough diagnoses that I need a second sheet on my medical forms, but if you ask me what’s wrong, I’ll tell you it’s a “neurological problem.”  It’s not that I’m embarrassed or in denial, it’s that it’s easier for me to talk about it that way.  I will never refer to it as a disability because of the things that word does to my psyche.  More power to those who can accept the label, but I’m not one of them.  Please don’t call me disabled or I might “accidentally” call you an asshole.

2.  I do not strive for sympathy.  Sympathy makes me wildly uncomfortable.  In real life, I rarely bitch to anyone other than my husband (he’s just so damn lucky he doesn’t even know it) about my pain.  Sympathy sends me straight to a pity party and those are almost never constructive.  Unless there’s cake.  So basically, don’t offer sympathy if it doesn’t come with cake.

3.  I have a headache just about every day.  If I don’t mention it, don’t assume it’s because it isn’t there, it is.  If I don’t mention it, assume I don’t want to talk about it.  I’ll never be offended if you ask me how I feel, there’s absolutely nothing wrong with that.  But, nothing makes me feel more like a faker than when someone indicates that because I didn’t mention the pain to them that clearly it isn’t that bad.  That’s an assumption.  And you know what they say about assuming- it’ll get you called an asshole.

4.  This neurological problem of mine is largely invisible.  I have a scar, but only if you look closely (I’m going to try to capture a picture of it for you soonish).  I have slightly limited neck mobility, but frankly you’d only notice that if you were a physical therapist.  Just because I don’t look like shit doesn’t mean I feel well.  If I do look like shit, assume that I’m REALLY suffering.  And for the love of God, DON’T TELL ME.  I know I look like shit.  I do not need confirmation.

5.  Just because I’m out of the house or I’m busy baking or even exercising, doesn’t mean I’m not in pain.  Please understand that if I find myself blissfully out of pain, I will tell everyone I’ve ever met.  Ever.  Because those days are very few and far between and they are glorious.

6.  Some days I can do a lot.  Some days I can barely stand up.  Some days I shouldn’t stand up but do.  I know you’re worried about me, but you have to trust my judgement.  If I say I can do it, assume I can.

7.  If I do go out when I probably shouldn’t, don’t rub my stupidity or your ability to predict problems in my face.  Sometimes it’s worth extra pain to enjoy something that I shouldn’t.  It sounds crazy to cause myself pain, but sometimes living with pain is better than not really living at all.

8.  Some days I really CAN’T do anything.  Please don’t roll your eyes at me when I say I’m in too much pain to do something.  I know some of you will never believe me or attempt to understand.  You’ve had headaches before and it didn’t mean you had to miss out on life.  All I can say is that we’re different people, and to imply that I’m a sissy is like implying that you are an asshole.

9.  I know it’s inconvenient when I cancel at the last minute.  I know it sucks when plans are blown to bits.  I know because I experience it too.  I feel guilty as all hell when I have to back out, but know that I will always do my very best to make it up to you.  I’m not a flake, but some days I am a prisoner to my pain.  I’d rather be with you any day.

10.  You are welcome and encouraged to suggest treatments that might work.  But you cannot be offended when I tell you it doesn’t work.  I’ve been in a state of almost constant headache for a year now.  I’ve tried just about every drug on the market.  I’ve tried alternative medicine.  I’ve tried different pillows, sleeping with my head elevated, sleeping flat, massages and a plethora of other things.  I have not tried acupuncture because I can’t afford it.  I hope to try it some day, but that won’t be today.  So when I say I’ve tried it, I’m not brushing off your suggestion.  I’m just telling you that I totally thought of it first.

11.  Don’t tell me that I shouldn’t have had surgery.  This one drives me CRAZY.  That point is completely irrelevant.  Since time travel has yet to be perfected, I can’t do anything about it.  And though the surgery didn’t give me the life cure that I wanted and is most likely responsible for permanent nerve damage in my hand, it did give me 8 months of my life.  8 blissful months of near normalcy.

12.  Don’t judge me for taking pills.  I have prescriptions for anxiety (Klonopin), nausea (Zofran and Phenergan) and for dizziness (Meclizine).  They were given to me by a doctor, one whose arm I didn’t twist to get them.  I take them because some days I NEED them.  Some days I cannot function without them.  I hate being bound to my pill bottles, but I am.  And it is more difficult when you judge me for it.

13.  If I answer “I don’t know” to your question, don’t assume I’m holding out on you.  I really don’t know what’s next.  I really don’t know why this is happening.  I really don’t know anything but what’s going on in my life.

14.  Even with diagnoses, prescriptions and bad days, I am still me.  Always.  Pain doesn’t define me, but it has changed me.  And it’s up to you to decide if you can or want to deal with the person I am now.  I understand how complicated things get and I just hope that you can still see me somewhere in this mess.

15.  I still love cake.  A lot.  It is ALWAYS encouraged and appreciated.

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