Friday, February 11, 2011

living with both pain and people

I of my hopes is that some other person who lives with chronic pain, or who loves someone who does, will find some sort of solace in some of my ramblings.  I want to make others feel less alone and to feel like my fight has some form of positive impact.

I've had a really intensely bad spell of endo pain.  It had acted up a bit for a while but kicked to a new level last weekend.  I put the blame on spending a couple nights at my father's place where my allergies are challenged by three cats.  Of course, the friendliest one is the most allergy-laden (side note: until meeting Caesar, I really didn't know there were cats who were that social...I'm totally a dog person but I can see loving that type of cat).  I know my endo kicks up whenever I'm sick and my body is struggling.  It makes sense that allergies would be even more challenging.  Endo is thought to be auto-immune, meaning it is my body's defense systems that cause the problem, so my immune system going a bit haywire with the allergies leads to the endo acting up as well.  But time has passed, my allergies are fine, and I'm still doubled over.

I've written a lot about life with chronic pain (I'm too lazy right now to link, but check the "health issues" label if you want to read more).  I don't think people realize how much chronic pain invades one's life.  The physical toll is obvious and most people would spot some degree of related mental toll such as being tired and worn down.  And snippy.  But there are so many complex ways in which pain invades a life and that's on my mind again.  Pain like mine, chronic pain that can get really severe at times but is almost always there at least at a low level, becomes a significant part of one's life.  It isn't fatal so it may not get walks and ribbons, but it still robs one of so much and complicates just about every element of a life.

Endo has no cure.  Sometimes they can manage it a bit, sometimes they can't.  The reality is that it is going to be with me for many years to come.  It isn't a truth I like, but it is one I need to accept in order to live (though I'll admit to crossing my fingers and clicking on the CNN health page with hopes for a breakthrough).  I can't leave it.  It will be part of my life for many years to come.

And it will be the part of the lives of people who get close to me.  I can keep it out of the workplace (well, 98% of the time...I'll apologize if it makes me snippier than I like and I have learned how to be productive even when it is acting up) and casual friends may only see it in the form of a cancelled plan once in a while.  But if you are a big part of my world, the endo comes with the package. 

This makes me feel guilty.  I'm darn good at feeling isn't a talent I relish.  It isn't just sometimes being short-tempered, I feel like I can apologize for that and it is fleeting.  The deeper impact is that it makes me withdraw and cry and just be a lump of a person.  It is draining.  It is absolutely more draining on me.  Please don't try to imply doesn't even come close.  But it is certainly draining on those around me too, especially anyone living with me or in a significant other role (my parents read this, so I'm not going into some "special" impacts on that role...ultimately, those aren't the number 1 issue anyway).  It comes with the package.

So, I feel guilty.  I often bemoan the fact that endo isn't fair, that it isn't my turn to be sick anymore.  But it is, literally, inside me.  I can't escape it.  But no one else has to face it.  I feel bad making it anyone else's problem.  The people that I tend to invite into my life, particularly those in roles that would be impacted by the pain, have amazingly good hearts.  In some ways, that makes me feel guiltier.  They are less likely to complain and they may not always admit, even to themselves, that they resent it (or are angry or any other negative emotion). 

There's no magic answer here.  It is important to me to remind people that they can get out it if they need to.  I'd certainly be sad but I'd understand.  I think that reminder can be a bit upsetting to receive, but I need to make it.  On a simpler note, I understand needing an escape.  Sometimes I can be comforted by a gentle backrub, a tissue/water fetcher, or just a couch companion.  But it isn't something where I need a constant companion and will absolutely understand if someone needs to escape to a movie or for a drink.  I need my companions to know that I "get it" and understand.  I'd escape sometimes if I could!

I don't have perfect advice for folks who open their hearts to chronic pain sufferers.  But know that most of us realize we present a special challenge.  We understand it is hard.  DO NOT suggest that the pain impacts you as much as the sufferer, it simply doesn't and suggesting otherwise is inconsiderate.  But do be honest, with us and with yourself.  Talk to us.  Pick the right time, sometimes I am really wanting to talk when the pain is bad but not always and that may not be true for everyone.  But do talk.  And know that you can't fix us.  I think that's especially hard for men in romantic relationship, they want to solve the problem and feel helpless.  Rest assured.  You make our lives brighter and you don't fix the pain but you make it easier.

If you are a fellow sufferer, I'd love any advice on how you balance pain and relationships.  Especially how you deal with guilt about the subject.  My own advice is to just appreciate the people who support you.  And tell them.  Risk being annoying and telling them more rather than just thinking it is assumed.  We have a lot to offer, I know I can give a lot to those around me, but we come with an asterisk and we need to appreciate those who accept the whole package.

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