Monday, March 18, 2013

Endo Months Week 3 - Social Impact

The Week 3 topic for the Blogging for Endometeriosis Awareness 2013 campaign is the social impact that endo has had on your life. For the first time in the campaign, I find myself staring at a blank page.   This is not because I don't have stories to share, I'm just not sure where to start. Once again, my thoughts about endo overlap with my thoughts about my back problems and my comments apply to chronic illness in general. 

When I started dating the man I refer to as MM (for "Military Man"), I felt the need to give him a few bits of information about me. These tidbits were more accurately characterized as warnings. I wanted him to know what he was getting in to and give him the chance to bail guilt-free before things got too emotionally involved. Ironically, I wasn't really able to warn him about the back issues that have really dominated the past couple of years. However, the warnings included the fact that I had endo and that the pain was a significant issue in my life. He replied that he grew up with four older sisters, felt pretty adept when it came to "girl issues," and was "not scared yet."  While I was pretty sure this went beyond his sibling-based experience, it still made me smile.  And it wasn't all that long till he faced a flare and he fared well....and I made sure to reiterate the "bail guilt-free, but do it now" message a few times in the early goings (and the middle-goings too when the back became life-altering).

The truth is that this warning was motivated by experience. I had ended a marriage not long before (well, mentally/emotionally ended, the legal process took longer), a relationship of eight years. I don't want to say that endo caused the dissolution. That's far too simple and sounds far too accusatory. Ultimately, it was a matter of incompatability. But the fact that I was not "healthy" added to the mix. It meant I was tired a lot and being social has always been a bit difficult for me since, as a textbook introvert, socializing often takes energy from me rather than adding it to me.  X wanted a more active social life, not only was I not sure I wanted that (don't get me wrong, I like to go out and play, but I'm still mostly a homebody) but also knew that I really didn't have it in me.

I also need a bit more caretaking from my partner than I'd like to admit and that wasn't the relationship X envisioned. He had seen me through the diagnosis and the three endo surgeries (for me, these were relatively simple surgeries), but he hadn't really contemplated how it would impact our lives. In one particularly frank discussion in the days following the decision to end it, X admitted that he'd pondered breaking up when I first fell ill, but he didn't want to be "that guy" and leave a sick partner. I do understand this. However, and this is why I told MM so many details upfront, I ended up wishing he had left then, especially before the "I do"s.   Illness impacts a life in many, many ways. It also impacts relationships, especially romantic partnerships. I do not think less of anyone for saying they aren't equipped for having a chronically ill partner, but I urge anyone to be honest upfront. If you are looking at a relationship with a woman with endo or with a partner with any other chronic illness, you owe it to yourself and your potential partner to be honest and to give it a lot of thought. It is better to say no early than to do so after a long involvement.

MM and I are now engaged. He's been an amazing partner and a wonderful support through some hard moments in the chronic illness journey.  I tout the five hours by my side in the recovery room, bu it is really the day-to-day that is most impressive and most appreciated.  That said, as we look towards the big next step, I hope that one day we get more of the "in health" side of the game!

While I'd like to end on that witty (at least in my mind!) note, I have another thought I want to share. Chronic illness, including endo, can become all-consuming.  It makes it hard to invest the energy in forming new frienships and nurturing old ones.

I have been mulling this a lot recently, regretting that I've let some friendships lapse. I can cite a lack of energy, tied to chronic health ailments, and plenty of other causes.  But I also need to take more ownership.  Even if visiting is tough, I have times when I could write a note or make a call (I am not a phone person).   I have one particular friend in mind, a woman I've known for many years who has done more than her share in our friendship.   She's visited and offered to host and she left more than one message in some of the rougher days.  The connection has fizzled...and it is my fault. I am sorry and I owe this friend a more than just a reference in a blog entry she may not read.

Any relationship with someone who suffers from a chronic illness requires special care and understanding.  "We" only have so much we can handle (see the Spoon Theory for a helpful discussion of this concept) and we need to focus on social relationships that are positive.  I could write plenty of advice on being a friend to or partner of a "sick" person.  However, the "patient" also needs to do her share, especially in the phases that are more about every day management than the days just after a diagnosis or the time around a procedure.  Illness makes social relationships hard and, to use a favorite concept, I think this can be an explanation. But, and perhaps this will be a bit controversial to say in the Endo Month blog campaign, that doesn't always make it an excuse.


Jamee @ A New Kind of Normal said...

I totally wrote my post about being an introvert as well (so I completely understand what you meant when you spoke about how being social took even more energy than it would for an extrovert)! I most definitely need quality alone time for my sanity and getting others to understand that being stuck in bed in pain does not equal "alone time." It simply equals stuck in bed in pain! No wonder we get along so well! :)

Diane said...

Great post. I never really thought about the fact that being an introvert already makes it even harder to push through when we are in pain to be social. Thanks for that!
And I relate to everything you said about your ex. My story is sooo similar. And I wish he wouldn't have walked me down the aisle before leaving. :(

I hope this current relationship of yours continues to be everything you need!

Lesley said...

Once again your post hit SO many nerves with me and I feel like sometimes you speak what is in my heart.

Anonymous said...

I didn't think about it specifically in my social life post, but I'm very much an introvert too. (And an introvert with a very person-to-person, interactive, "extroverted" career.) Even under the best of physical circumstances, being "high key" sociable (large crowds, people I don't know well, formal events, events where mingling is expected) is dreadful. Add in some bad pain, and sometimes even "lower key" (case in point, last night, I turned down dinner in-home with two of my friends) events can be unworkable.