Sunday, November 25, 2012

Thank "You", Love "Us" -- For My Support Team and Every Person Who Battlles Alongside the Chronic Pain Patient

I confess...I have lots of posts rattling around my head about life with chronic pain.  I feel like a one-trick pony at times (okay, two tricks...I post book reviews too...), but it is a pretty dominant force in my life.  I also truly believe that it is important to talk and be open about illness and hold on to a hope that an entry makes just one person feel less alone.

It is a bit belated, but I'd like to ramble about what it means to have good, supportive folks in your life.  Before I do, I feel compelled to "drop a footnote" or two (and to then note this clearly isn't an actual footnote).  First, every person is unique and has a unique experience of illness.  I do believe that there are a lot of things that apply to many of "us" so I often write from what I think is common, oft-shared ground.  My posts may just refer to a generic pain/illness patient, and I may throw in a lot of "we"s, but I do know not every patient would agree with every thought.  Second, I know that there are degrees of chronic ailments.  My chronic pain is tough, and I'm quite prepared by now to label it fairly severe without questioning if I'm too sensitive (which is a post itself since it took work to dismiss the inner and outer voices calling me a "wimp"), but it isn't fatal.  There are people with much tougher burdens, much harder roads.  I can fall into a lot of guilt about complaining when there are people facing greater fights, but I try to remember (and to remind others) that the fact that some may have it worse doesn't mean the struggles of a pain patient are any less.  

With all that said...

This is a post for all those people who support all of the long-term patients.  It is for every person who has ever sat in the "visitor's chair" in a doctor's office or been unable to go along but heard a loved one report on yet another frustrating medical visit.  It is for everyone who has sent healing thoughts (or prayers if they practice that form of faith).  It is for everyone who watches and sees and supports and loves.... 

As patients, "we" may often dwell on the troubles of our bodies, it is hard not to be overwhelmed by pain and illness, but we still see our blessings.  We appreciate and we are thankful for all of the people who give us love and support on our difficult journeys.  We see it in the "big" supporters, the front-line troops, like partners and families and the closest of friends.  And we see it in the rest of our team, like the friend who sends a hug in response to a "rough day" update on Facebook and the neighbor who carries up a trashcan or offers a hand with groceries. 

We know that illness or chronic pain affects more than just the patient.  We know our limitations can become our loved one's limitations too when it means we can't just leap (even figuratively!) at the suggestion of a day trip or even a dinner out.  We know people give things up for us.  We know that our support team choose to take this as part of the "package" and we do understand that there are moments when the "work" of taking on our battles is hard and when "you" get frustrated with what it all entails.  And that's okay...we "get" it and it makes us appreciate you even more for choosing to be our teammates and stay with us through the fight.  You can be honest about thit being hard, we know it is.  And we hope you have support in being our support....whether through venting to your own "team," reading the stories of other "pain patient supporters," or even a more formal support professional.

We appreciate all the gestures, both big and small.  While the big ones may get the most attention, it is the little ones that really and truly help us on our journeys.  A simple hand to help us up from a seat or across unstable ground.  Or a gentle hand on our arm to let us know we aren't alone when you see the pain take over and "win" despite our attempt to fight it (and the fact that you know us well enough to see when a pain spike strikes).  We may not say it every day.  We'd run out of words if we said it every time we felt appreciation for all you do.

An important note that is at once a simple thought and a very complex one -- We know you can't "fix" it.  We know you want to and that this can be especially taxing on parents and partners (I'll even go gender-specific and say men are taught to be problem-solvers and many are frustrated at not being able to solve a girlfriend/wife's pain).  We know many of you would take it for us if you could and would sacrifice greatly if it meant a cure.  Know that we love you for wanting to solve it but know we don't expect you to do so.  We know you know it too, and that knowing you can't fix it might be the hardest thing about being a support person.  But please know this too, whether you are a partner, a family member, a friend, or another ally -- you DO help.  Every single day....even the worst ones when we can't see beyond the moment and when it feels like the pain or the illness is winning and will never cease...we see you and we love you for being there (even from afar).

Thank "you" -- Love, "us"


Annabelle said...


EndoJoanna said...

This is a lovely post. You put so much thought into it and being a chronically ill patient, I appreciate your words very much. Chronic pain is devastating on everyone.